Wednesday, May 02, 2012

To Elizabeth, With Love

ElizabethEllen and I wanted to take a moment to pay homage and congratulate the Hon. Elizabeth Witner on her new post as chair of the WSIB.  While I’m sure her decision to leave politics was made with a heavy heart, I know that she will lead the WSIB with as much enthusiasm and passion that she gave each and every day as an MPP.

Elizabeth’s work in our Province is well known – transforming our Health Care system while she was the Minister of Health, significantly increasing long-term care beds, introducing Tele-health, and creating the first comprehensive strategy to deal with Alzheimer’s Disease.  She was always tireless in her efforts to make our Province the best place to live in the world, and she always worked for the betterment of the people of Ontario.

Elizabeth once told me that she wakes up each day with the hope of making this world a better place for at least one person.  As an MPP, she served for over 8,000 days in office, and I’m sure she made the world a better place for many, many, times that number.  Born with a rare, progressive, and devastating disease, my son Isaac is one of those people.  Without Elizabeth, my son wouldn’t have the chance at a life that he does today.

When Isaac was first diagnosed with MPS VI, we were told that there wasn’t much hope for him to have a long and productive life.  Without a very expensive treatment, which wasn’t available in Canada, Isaac would have been left to the ravages of the disease, suffering from severe joint stiffness, heart and airway disease, spinal cord compression, shortened stature, and premature death.   Obviously, Ellen and I were devastated.  We were informed that a treatment existed, but the cost was over a million dollars a year and the treatment could not be obtained in Canada.  Immediately, we went to work.

In short order, we attained permission to bring the treatment to Canada – contingent on the Province funding it.  The Liberal government immediately rejected our application, with many excuses being given for their decision.  With nowhere to turn, I contacted Elizabeth, who was the Health Critic at the time and she made an appointment for me to meet with her for the following day.

I will never forget that meeting in her office in the Legislature.  I arrived with brochures, papers, and rationale about why the government should try to save the life of my little boy, and I expected just a few minutes of Elizabeth’s time.  When I entered her office, I pulled out my papers but Elizabeth didn’t want to see them.  She just wanted me to talk about my son.  She wanted to know all about him, about the joy that he brings our life, about our hopes for his future.  After a few hours together, we were both in tears as I explained to her how quickly we would lose our son if he didn’t get the treatment he needed.  In the end, she simply hugged me and said “I’m going to help you.  Not because I’m a politician but because I’m a mother.”  I left her office, sat in the sun at the McDonald Statue in front of the Legislature, and called my wife to deliver the news.

Elizabeth made good on her promise, tirelessly advocating for our son against seemingly insurmountable odds.  She raised his case during Question Period and spoke to the media on our behalf.  She pushed for rationale behind the decision to deny Isaac treatment and relentlessly kept the pressure on the government to save him.  After a few months of dedicated work, we were successful and Isaac’s treatment was approved.

Too often in politics, “compassion” is a term often quoted but never demonstrated.  But Ms. Witmer unselfishly came along and took up our cause. She gave us Hope at the very moment when all seemed lost; and she gave us faith.  Elizabeth’s determined work in the Legislature has allowed our family to Hope again for the future. While the government did nothing to show their support for Isaac, and while the government showed no remorse for our family situation, Elizabeth Witmer came to the rescue.

Her kind, caring, and compassionate work changed public policy; something that I was continually told could never be done. Elizabeth changed my belief in the political system and showed me that it is possible for our elected representatives to make a difference in the lives of the people they represent.

Our family is indebted to Elizabeth for what she has done for us. She has changed our lives immeasurably and has given Isaac hope for the future. That's all any parent can ask for - Hope for their children's future.
Isaac Soccer
The photo to the right was taken at Isaac's first soccer game - a moment we never thought he would experience in his life.  Thanks to Elizabeth, he did.  Although we can never repay her for her kindness and support, I will continue to send her updates on our son’s life and the amazing things that he’s accomplishing.  I can’t wait to send her a card when Isaac graduates from highschool. I can’t wait to invite her to our son’s wedding, to send her a thank you note when he starts his first job.   I can’t wait to share the announcement of the birth of his first child with her. And I truly can’t wait to have her celebration party when we make the announcement that we've found a cure for this horrible disease. No matter what the future holds, we have one for our son thanks to Elizabeth Witmer. 

Ellen and I wish her nothing but the best as she leaves politics for a new challenge.  And I hope that she knows that her legacy of helping make the world a better place for those around her has been fulfilled.  I know this because I see it in my son’s beautiful eyes each and every day.

Thank you, Elizabeth.

With Love,
The McFadyen Family

Saturday, December 03, 2011

Someday We'll Find It...

"Someday we'll find it, the Rainbow Connection - The Lovers, The Dreamers, and Me."

So go the lyrics to a beautiful song written to inspire hope when hope is all you have left to dream for. I grew up listening to this song and fell asleep listening to it on countless nights. It was part of Kenny Loggins' "Return To Pooh Corner" album, a mix of children's songs he put together many years ago, although the song originated elsewhere.

When my kids were babies, I spent a lot of time singing this song to them as they drifted off to sleep in my arms, some of the most precious moments I've ever had in my life, and memories I'll cherish for as long as I live.

This evening, I found myself listening to that song once again, but this time I had tears streaming down my face as I snuggled up with Isaac. We were in the movie theatre and, of all people, Kermit the Frog was singing away to "Rainbow Connection" on the big screen in front of us. Isaac was weeping because it was a sad part in the movie (he's always been an emotional soul), and I was weeping because of the news we received yesterday regarding Isaac's health.

For the past year and a half, we've been thrilled by the fact that things with Isaac have stabilized - for the first time we finally felt like the symptoms of his disease had stopped progressing - we'd halted things where they were. On Friday, all of that came crashing down on us as we got word from Isaac's cardiologist that his heart has become enlarged again. We've been through this before - Isaac's been on heart medication to stop his heart from getting enlarged for a number of years. Up until this point, the medication has worked. In fact, over the course of the past few years, his heart has shrunk down to it's normal size again. But yesterdays news was earth shattering for us. For some reason - the meds are no longer working and his heart is now 25% enlarged again, and we don't know why.

We've been told that it could be due to valve leaks - we hope this is the case. In fact, this is the best case scenario at this point and, for the time being, we've switched his heart medication to another type in an attempt to stop the heart from becoming enlarged. We hope and pray that this will work because the other reason for the enlargement is so much worse - cardiomyopathy or, essentially, the beginnings of heart disease/heart failure. Facing your own mortality is scary; facing the mortality of one you love is devastating.

For the first time in a long time, I'm scared again - devastated - and I feel like I have the weight of the world on my shoulders. And I feel helpless. Helpless because I don't know what I can do to make this better for Isaac; I don't know how to save my little boy.

For now, we're going to redouble our efforts with The Isaac Foundation and work as hard as we ever have in order to find a cure for Isaac. Our research project that we're currently funding has been shown to get into the hearts of those effected - could this be the hope we need? Is there another project ready to be started that can help Isaac's heart? All we have are these questions, but it's a place to start.

It may not help but please take a moment to send this blog on to anyone you know - you never know who's reading and can help out. You never know what might be. I've always been a dreamer - maybe this entry will find it's way to a million people. And maybe each person will find it in them to send our Charity 1 dollar. Research projects cost a lot of money, and maybe that money is all that stands in the way of us saving our little Isaac. It seems like a big dream, but it's all I've got right now.

If you can't send this along, please take a moment to keep Isaac in your thoughts. The support we get from around the world has been, and continues to be helpful, and we could use the extra thoughts right now.

I'll update when I know more - hopefully with good news. For now, back to the grind raising money and awareness about this devastating disease; back to finding a cure for our son. Someday we'll find it - the Lovers, The Dreamers, and Me.

With Love,
A.




Thursday, August 25, 2011

The Heart of Life

Hi All,

Isaac's First Concert Performance. I thought I'd share with all of our supporters so that you can see the Hope and joy he brings to us each and every day.

Enjoy, with Love,

The Isaac Foundation


video

Thursday, August 18, 2011

How To Save A Life - Don't "Wait On The World To Change"



Hi Everyone,

As a educator, I often look for ways to help our children become empathetic, caring, and compassionate individuals. When kids leave my classroom, I want them to strive to make the world a better
place; I want them to understand that they CAN make a difference in the greater world around them. I want them to knowthe importance of helping others.

There are many ways that teachers help guide their students along thepath to caring - books, news articles, projects, and fundraising activities all come to mind as examples I see in schools across this country. All of these activities are well and good in the classroom, but none if it matters if we don't stand in front of our children and lead by example. None of it matters if our students don't see us practicing what we're preaching. To me, taking a moment to fight to save the life of Jasper More (pictured left) shouldbe on top of everyone's list of "To Do's" today as we seek to set that example for our kids.

2 1/2 year old Jasper More was recently diagnosed with an ultra-rare enzyme deficiency called MPS VI. Essentially, Jasper lacks an enzyme in his blood responsible for breaking down cellular waste in his body. This waste then builds up and stores in his bones, tissues, organs, and muscles. Progressively, this disease devastates the body. Internal organsbegin to swell, joints begin to stiffen, and heart and airway disease begin to take over. Along with a host of other catestrophic symptoms this disease leads to a shortened stature and a severely shortened life span.
My wife and I were sick with fear - I lost 40 pounds in a few weeks, and we were devastated that the future for our little boy was forever changed. At that time, Hope seemed lost.

When a child is diagnosed with this disease - and there are only 8 cases in Canada - the news is devastating. I know this because my son, Isaac (right), was diagnosed in 2006 at the age of 18 months. At that time, we were told that our beautiful little boy may not reach his teens and that the years leading up to those teenage years would be filled with painful surgeries and horrific symptoms.
However, we soon learned that Hope wasn't lost. A treatment for this disease was available, albeit not in Canada. The treatment consists of a weekly infusion of a synthetic version of the enzyme that children affected with MPS VI lack. Studies have shown that this treatment dramatically slows the progress of the disease, if not halt it altogether. It's not a cure, but it is certainly a lifeboat for our children until a cure can be found. Because we lack an Orphan Drug Policy here in Canada, we had to apply to have this treatment brought to Canada using the Federal Government's Special Access Program (SAP). We were quickly granted the right to bring the treatment (ERT) to Canada - contingent on the province funding the administration of it to our Isaac. And herein lies the problem - treatment costs for a small child can start around $300,000 annually and escalate to $1,000,000 for a young teenager.

Through our heartfelt lobbying of the Ontario Liberal Government, assisted by the tireless advocacy of MPP Elizabeth Witmer, we were successful in securing funding for Isaac. Today, because of his treatment, Isaac is a happy 7-year old boy who loves to read, play with his toys, and spend time with his best friend, his younger brother Gabriel.

The battle for Isaac's life was won, a battle that should never have taken place in the first place. With the success of Isaac's fight, and the obvious benefits to the treatment that the government was now funding, it should have been easy for Jasper's family to get a quick approval for the same treatment. After all, our Health Care System is designed to provide Equal Access to All - we're set up to ensure the best care for all Ontarian's regardless of age, gender, religious beliefs - regardless of anything. To bolster the case for providing treatment, ERT is already approved in the United States, the European Union, Australia, and other developed countries! In fact, treating MPS VI with ERT is
the standard of care in these countries.

But on Monday, Jasper's family got the heartbreaking news that the Government had denied funding for the Life-Sustaining treatment that Jasper needs - the exact same treatment they are currently funding for Isaac. Jasper's parents, and our family, were stunned by the news. How can we allow this disease to ravage Jasper when we know we can stop it?

Thus began our battle anew, and we've had to cross our government officials again in order to advocate for the life of a little boy. As a member of the federal Liberal Party, and as an aspiring Politician, I've put myself in the line of fire amongst members of my own party. After all, it isn't every day that a die-hard Liberal has to battle his own party in order to enact change. But if I didn't work hard on this file, I truly believe I would be doing a disservice to the students I teach each and every day, and I believe I'd be letting my own children down. During my campaign a few years ago, I talked at length about preserving our Social Safety Net - standing up for those in need, protecting the most vulnerable in our society, and fighting for what I believe in. Doing the right thing is never easy, and working to save Jasper's life is the right thing. Whatever the cost professionally, this is a step I need to take in order to ensure that Jasper gets the same opportunity that my son has had.

But we need your help; we can't do this alone. Taking 2 minutes out of your day (every day) can and will go a long way to saving Jasper. It will also go a long way to ensuring that our Health Care System truly does provide Equal Access To All - you never know when you will require the services supposedly afforded to all Canadians. By calling Deb Matthews, our Minister of Health, directly, you can allow her to understand how important providing proven Life-Sustaining treatment is to the people of Ontario. Sending an email to her office and cc'ing Premier Dalton McGuinty will do the same. Typing out a tweet to their accounts allows word to spread and momentum to pick up in support of Jasper, and commenting on online news articles allows our politicians to realize that this matters to the public. As well, sharing Jasper's stories on your Facebook and Google+ feeds allows others to participate and make a difference.

And we CAN make a difference. Holding our elected officials to account only takes a few minutes a day. And those few minutes will save the life of Jasper More.


Ironically, as I type away at this blog, my son Isaac and his brother Gabriel are listening to their friend and hero, John Mayer, and singing away to his anthem "Waiting on the World To Change". Watching him dance around and sing to his heart's content, I know that we can't just sit around and "Wait for the World to Change" - we have to take action NOW and do it ourselves. Please take the time to help this change by connecting every day with friends and family about this file. And contact (everyday!) the numbers and twitter accounts below. Together, we can make a difference.

I'll sign off this overly long (sorry!) blog update by explaining our Foundation Slogan. We chose "Love, Laughter, and Hope" because our son gives us the first two each and every day. But sometimes, all you have left is Hope. Jasper and his Family need all the hope they can get these days, and I'll thank you in advance for providing that.

With Love, as always,

The Isaac Foundation

Thursday, December 23, 2010

Christmas at Sick Kids' 2010


Hey Everyone,


Well, another year has past and once again I find myself sitting here at Sick Kids' Hospital with Isaac, waiting for the time to tick by and for treatment to end so that we can race home to be with our family and start our Christmas Celebration.


We've spent the passed 5 years here, always coming on a weekly basis but sometimes finding ourselves here a few times a week during certain months. This means that we're always here close to Christmas - if not on Christmas Eve then definitely the day before. I'm always amazed at how calm the hospital seems during these times, the hustle and bustle of most weeks is gone. I guess only those that truly need to be at the hospital are here today, and staff have begun their holidays and are at home with their loved ones.


It's quiet again this year. But it's a good quiet and, truth be told, I love this time each year. As I type this long awaited blog update, I am sitting on the 4th floor of the hospital, a place that has been our home away from home since Isaac's diagnosis. Below me in the atrium, a musician is playing some acoustic Christmas carols for the people that find themselves here today. The soft music of his guitar adds to the already calm atmosphere here today, as his voice echoes throughout the half-empty hallways and through the rooms filled with sick kids. A therapeutic clown is dancing along to the music, and a few of the kids here today are dancing and playing with her. It's a beautiful sight to see.


I say I like this time here each year because it gives me the perfect time to put things into perspective and reflect on the past year. 2010 has been a wonderful year for our family. We've been fortunate to have Isaac is excellent health - probably the healthiest that he's been since this journey began 5 long years ago. In September, we increased his treatment dosage with hopes of seeing an improvement in his growth. So far, the increase seems to have been successful and he's growing a bit more each week - always good news when you are dealing with the disease we are dealing with. His shoulder joints seem to be showing some improvement, and his physiotherapist has been happy with the progress he is making with his fingers. And we haven't had any emergencies this year, thank God. A good year health wise, and I'm thankful to be sitting here typing that news.


The Isaac Foundation was fortunate to be able to give out another grant this year - renewing Dr. Hopwood's project for another year. Details on the project and the Lay-Person Summary can be found on the RESEARCH tab on our website. There is also promising news coming from the other project we funded over the past three years - news we hope to share in the coming months that will be beneficial to Isaac and others affected with MPS diseases worldwide. Money raised from our fundraising events and private donations to The Isaac Foundation went directly to supporting these research projects and we would like to thank everyone that donated to our cause this year. Your help does make a difference - we see it every day in Isaac and we feel it each and every moment with the hope your donations provide our family.


This year, we again participated in the RUN FOR ISAAC! event and organized our Golf Tournament. In addition, we hosted our first annual Gala for a Cure - a wonderful evening that included wine tasting, live music from Juno Award Winner Ron Sexsmith, dinner, and a silent auction. We presented our friend, Elizabeth Witmer, a Conservative MPP from Kitchener-Waterloo, with the first "Lifetime Impact Award" for her incredible contribution to the quality of life of Isaac. She was instrumental in securing treatment for Isaac. I continue to say that he wouldn't be here today if it weren't for the support of Elizabeth. She's an incredible Mom, Politician, and Friend and we were grateful to present the award to her during the Gala. We were thrilled with the success of the Gala and look forward to hosting it again next year - we hope to see many of you there again and, if you couldn't come this time, hope you can make it to our next one.


Isaac was fortunate to spend some time with two of his Hero's (and self described "Best Friends") - John Mayer and Roy Halladay. Mayer spent some time with Isaac in February at his show in Toronto and again in August when he came back around on tour. John even spent a long time on stage talking to the crowd about Isaac and the small impact he had on John while they were hanging out before the show. It was a nice touch for John to mention him to his fans and nice for him to acknowledge that Isaac means a lot to him. In June, Isaac and Gabriel headed down to Philadelphia to watch their baseball hero play against the Blue Jays. Roy's wife Brandy very kindly organized an on-field visit for the boys and they got to see Roy before the game started.


While brief, these visits with John and Roy will be the memories that I will remember most from 2010. The look on Isaac's face when he saw Halladay walking towards him from the outfield is something that I won't ever forget - the beaming smile that flashed across his face and the look of wonder that he had as his "best friend" walked toward he and his brother makes me smile even still. I'll cherish the memory of Isaac and Gabriel pitching the ball to Roy, who was perched 10 feet away in the catcher's position, waiting patiently for the boys to try to reach the ball to his glove. Isaac told Roy that he was a better pitcher then him - something Roy just smiled at. Halladay would later go on to throw a rare Perfect Game AND throw a no-hitter in his first ever playoff appearance. I think Isaac's got his work cut out for him before he's the better pitcher!


And the kind words and shared warmth between John and Isaac during his visits are always moments that we will cherish. As I've written before, Isaac has true love for John - He loves the moments they share before concerts - the laughs and hugs - and February and August were no different this year. In February, Isaac made John a cute Valentine and gave it to him before the show. I guess it came during a difficult period for John, and it seemed to have had a bit of an impact on him. With all the controversy that was swirling around John during that time, I think his time with Isaac put a few things into perspective for him. Isaac gave him the Valentine and told him that when he saw the card on the stage, he'd know that John was thinking of him. And that's all he wanted - all he's ever wanted, from John - to be thought of from time to time by someone he looks up to and calls his friend. To me, that moment gave John a moment of pause - of reflection - and he indeed thought of Isaac while he was on the stage. And he has ever since - tweeting a photo of Isaac after his show in August being just one example.


Our son and our family are incredibly indebted to John, Roy, and Brandy for their kindness and warmth. Unbeknownst to them, we feel a great sense of hope when we are around them - hope for a future for our son, hope for a breakthrough in our research, hope for a change in the course of this journey we are on. Their support, and their belief in our son and his strength, makes us feel that things are going to be OK.


Five Christmas' at Sick Kids' has seen many highs and lows for us. This hospital has brought us inexplicable pain and sorrow - but it's also brought us warm memories of time spent together, and built a family bond that only strengthens with each visit, and this one is no different. As the music fades below me and the hospital begins to empty out, I guess it's time to sign off for 2010. I'll end by thanking each and every one of you for your tremendous words of encouragement, your support, and your donations. It's hard to keep the support for an organization strong over the years, but you all make it very easy. Each year, we feel our support network grows by leaps and bounds, and we couldn't thank you more. We hope you'll stay with us over the coming years - helping to spread our story, continuing to provide words of encouragement for our son, and participating in our search for a cure for Isaac. We can't do it without you, and I'm thankful knowing we don't have to.


Warm Wishes for this Holiday Season and for a Healthy 2010, from our family to yours.


With Love,

Andrew, Ellen, Isaac, and Gabriel

Friday, August 27, 2010

Justin


Sometimes life can be serendipitous. Case in point - MPS VI is so rare that only 4 or 5 known cases exist in all of Canada, a country of 35 million people. This week, I received an email from Justin Van Herrewegen, pictured above with Isaac at the Tim Horton's this evening, a 29 year old MPS VI sufferer who lives only an hour away from us.

Justin was first diagnosed with MPS VI when he was two years old - a time when there was little or no research being done on rare diseases and the outlook didn't look promising for those affected with this disorder. And while Justin was told he had a "mild" form of the disease (Isaac, apparently, has an advanced form), his experiences with MPS have been anything but.

Since age two, Justin has had numerous surgeries that stem from the effects that MPS has had on his body, including double hip replacements, heart surgery, and spinal cord surgery. He has lost hearing in one ear and, most recently, has had a tracheotomy that has resulted in him losing his ability to speak.

Justin contacted us this week because he was recently turned down for funding of the life sustaining treatment (Enzyme Replacement Therapy) that he requires by the Province of Ontario, and he didn't know where to turn for help. We went through the same battle for Isaac 4 years ago, and we are happy to help Justin fight today.

The government's rationale for turning Justin down for treatment is presented in a flawed argument - an argument that should be looked at closer and reversed in order to provide Justin with the Health Care he desperately needs in order to stave off, or at least slow down, the progression of his disease. The province contends, wrongly, that they refused funding for Justin based on "the very minimal available data on the natural history of MPS VI upon which to model potential treatment benefits." In addition, Justin's very impersonal letter of rejection from the Province continues that "there is currently a lack of data to clinical benefit to slowing and/or stopping disease progression with Naglazyme treatment of MPS VI at this time."

Clearly the Government of Ontario didn't take the time to note that MPS is a rare disease and, as such, minimal available data is all that exisits now, or will ever exist in the future. Data is hard to come by, considering there are only 4 other people in the country affected by the disease. However, this hasn't stopped Ontario from funding Isaac's treatment, and it hasn't stopped the BC government from funding treatment for one of their children. In addition, it hasn't stopped the Quebec government from providing the necessary and life sustaining treatment to their two affected treatment. In fact, it hasn't stopped numerous countries around the world from providing the necessary health care to their citizens affected with this disease, regardless of how minimal the "available data" is.

The fact of the matter is plain and simple - strong evidence exists within this province (through Isaac's experiences) and throughout the world, to show that the treatment being rejected by the government DOES slow the progression of the disease in most individuals. In addition, by slowing the ravages of the disease, ERT enhances the quality of life experienced by sufferers.

Enzyme Replacement Therapy isn't a cure - it's a lifeboat - but it's a lifeboat that Justin deserves to be on, just like the rest of us that are waiting until the day we're rescued from this incredible journey. Treatment has saved Isaac's life - it's increased his quality of life, and we're forever indebted to the Ontario government for providing funding for our son. We now call on the province to do the same for Justin.

Truth be told, seeing Justin today reminded me that we are still in the war of our lives, and while we seem to be winning the battle, we still have a long way to go. And it scared me a bit too, which, I guess, is why I'm up in the middle of the night updating our blog.

We'll keep you posted on our progress. If you can, please help by reblogging and commenting on this post because, in politics, there is always strength in numbers.

Thanks again...with Love,

A.

Friday, August 20, 2010


This is my son, Gabriel.  Four years old, and full of energy, Gabriel has been Isaac’s  best friend and constant companion during the long journey our family has be on since Isaac’s diagnosis.  I wanted to write a quick post about him today because he often gets pushed aside when we are at Isaac Foundation events and, at times, it’s tough to see.

When Isaac was diagnosed, we were told that 1 in 4 of our children would suffer from the same disease.  Trouble was, we were already 7 months pregnant with Gabe when we got this news.  After two tense months of waiting and hoping, we got the news that Gabriel was healthy and didn’t suffer from MPS VI.

By nature, Gabriel has never wanted to be front and centre whenever people are around.  When the boys are giving their daily concerts in the living room, Gabe never wants to be John Mayer - he’s more then happy to be Steve Jordan (or, at times, Pino Pallidino).  But, truth be told, it’s Gabriel - not Isaac - that wants to be a Rock Star and follow in his hero’s footsteps.  Isaac, on the other hand, wants to be a DJ and we’ve spent countless afternoons listening to the boys plan their future collaborations together.

In public, Gabriel is shy and reserved, often using Isaac as his official spokesperson.  But if we’ve learned anything through the experiences that we’ve had together as a family, it’s that Gabriel takes everything in - he sees, hears, and feels exactly like the rest of us.  During our visits with John Mayer and Roy Halladay, Gabriel doesn’t feel much like speaking.  Last week, he did summon the courage to give John a big hug, which was a big step for our shy boy!  However, when we get back in the car, he can’t stop talking about how excited he was and wondering “when we’ll get to see John Mayer again!”

At Isaac’s school, where they constantly run fundraisers in support of The Isaac Foundation and our search for a cure, the kids always walk by Isaac with a high-five, a “Hi Isaac!”, or drop over for a hug.  Often times, Gabriel gets left behind and I struggle with how to handle things.  But Gabe is resilient, and it doesn’t seem to bother him.  I think this quality in Gabriel, wanting the best for his brother but not wanting anything for himself, is what endears me to him and his personality that much more. I think it’s ME that struggles most when I see him being ignored, and I think I just have to learn to adapt to it.

Though quiet, Gabriel has been the perfect friend for Isaac during some difficult times.  They spend each week at the hospital together, often snuggled up in the hospital chair as Isaac receives his enzyme infusion.  They share a bed in their “big boy room”, and one of my greatest joys is listening to them as they lay in bed and chat until they are tired enough to fall asleep. I hear the sweetest things they say to each other and, listening to them late into the evening, I just know everything will be OK in our lives because we all have each other.

Thanks again for your support,

Best,

A.

Wednesday, August 18, 2010

Questions

"Does this mean I'll get away from having MPS VI now?"

This is the question that Isaac posed to Ellen before dinner tonight. We had just received a call from Dr. John Hopwood, one of the leading researchers on the planet in regards to lysosomal storage disorders. Dr. Hopwood was calling to discuss some of the findings in his latest research project, a project partially funded by The Isaac Foundation, and Ellen was explaining some of the exciting news with Isaac when he asked the question.

This has been happening more and more lately, and it's been very difficult for me to try and answer. Not because I don't have an answer for him, and not because I don't have hope, but it's difficult because I know how very much Isaac is thinking about his disease, and I can see how he is struggling to understand how and why he is different then the other kids around him. He wants be the same height as his brother, and he wants to be able to climb to the top of the climbers without having to have mom or dad there to spot him. And he wants to not have to go to the hospital anymore. But mostly he just doesn't want to have MPS VI, and it breaks my heart to see him struggle.

Thankfully, Ellen is handling things well - she's a pro, really, and I envy her strength as she calmly discusses Isaac's disease with him and as she patiently shows him that MPS simply makes him that much more special. And then he'll smile and say "you're right!" and the struggle is done until next time.

I can't wait for the day when Isaac asks that same question and we can emphatically say "Yes!" What a wonderful celebration it will be.

The photo above was shot by John Mayer last week during our stop-in to say hello. Was too cute not to post, and I don't think he'll mind.

Thanks again for your support. You can't imagine how much we appreciate it.

With Love,
A.



Thursday, August 12, 2010

Celebrity, Media, and The Truth

Celebrity is a curious thing. You work hard at what you do, people fall in love with you, your product, and the image you created, and you're on top of the world. Next, those same people that helped you make it big, with the help of the "media", start the process of tearing you down. Piece by piece they work their own craft, finding and distorting the small flaws in you that are (or should be) inherent in all of us, until they're satisfied that you can be judged by the public on the basis of rumour, innuendo, and lies, and not by hard work you put into your craft, the changes you effect in the world around you, or the impact you make on those less fortunate than yourself. Such is the case of John Mayer, and it's a shame that the media refuse to promote him for the kind-hearted soul that he is.

I logged online this morning and caught an article by Craig Outhier in the Phoenix New Times that calls Mayer the "douchiest douche of all time", "dismissible", and "uncharitable". Furthermore, Outhier goes on to suggest that the now infamous playboy interview that John did in February was simply a way for Mayer to further his career and spark interest in himself and pad the number of followers he has on his twitter page - a naive and foolhardy suggestion at best, and an outright lie, mischaracterization, and devious attempt to attract his own attention at worst. Regardless, Outhier's "article" in today's Times seems to accurately reflect the mission of most "media" outlets in today's age - build up, pile on, take down, and move on.

Outhier, and the other "journalists" that troll through celebrities lives and fixate themselves on the flaws of people like Mayer, force themselves to look past the good they do with their time and the impact they have on others, in order to sell print and make money. It's cowardly journalism at it's finest, and I'd like to believe that writers like Outhier didn't begin their career believing they would be doing their profession proud by publishing such biased and embellished trash and calling it news.

John Mayer is a favourite for news-outlet fodder, a favourite for biased bloggers to target and tear-down. Conveniently, however, these outlets leave out honest deeds that Mayer does whenever they write their tripe, and the decision makers that OK the publication of such drivel should be shamed because good writers don't overlook the truth before them, and good writers present the whole story.

For me, the whole story on John Mayer, his life, and his career should include the past 10 years he's spent honing his craft in the music business, crossing genre's and creating a unique style of sound that will last for generations. For me, the whole story on Mayer should include the countless children (like my son) that he has spared time for in order to make their world a better place, if even just for a moment. It should include the high-fives, the hugs, the smiles, and the words of encouragement he's given to those in need of the simple things in life. It should include all that he does for others, even if he doesn't go out of his way to broadcast it himself.

The John Mayer I know isn't a "douche". He's kind and caring, and sincere. The John Mayer I know was mortified and hurt at the interview that was published in February and would NEVER seek to further himself through other people's hurt. The John Mayer I know takes pride in helping others, and goes out of his way to make my son smile. As I type this entry, I'm listening to Isaac ask his mom why he has to have MPS VI, and it's breaking my heart. Of late, he's been struggling to understand why he drew this difficult lot in life, and I sometimes don't know what to tell him. But in the same breath, he's been able to find some small comfort in his unfair disease because of the love and care he's found in people like John Mayer. John's not "dismissible" or "uncharitable" by any standards, and the proof is in my son's smile.

If there's hope for the profession and for journalistic integrity, I challenge Outhier and those like him to put aside their bias and write a real, balanced story on Mayer. Salvage your integrity and do what you trained to do, which is write the truth, because to me, knowing what I know of John Mayer, you've done everything but.

P.S. I snapped the photo to the left this morning while Isaac was at the hospital. Instead of dragging his IV pole into the playroom, he chose to lay in his chair and listen to his hero on the iPad, a lasting glow from his time at the show last night.

P.S.S There's also a photo of John signing a guitar for our charity to auction off at our upcoming Gala, co-signed by Isaac himself.

Take Care and, as always, Thanks for your support.
A.

Wednesday, July 21, 2010

Perspective

Hi Everyone,
Thought I would take a moment to update our blog. I know I've been neglecting to update things, but I never seem to find the time - or the right time, I guess, to write a few words.

I've been home for the summer with the kids and we've been having an incredible time. I didn't get the chance to do that last year; I was on the campaign trail most days. Essentially, I was out the door early, in late, and in bed even later. While it was an experience I won't soon forget, and I do feel like I still have a passion for public office, I think my election campaign got me away from a lot of things that are truly important in my life.

Going into the campaign, I was advised to step down from my position at The Isaac Foundation. Politics can be a nasty business, as any casual observer must know, and my team felt that it would be best to leave The Isaac Foundation in order to ensure that the organization was safe from attack from those around us. However, I didn't realize that stepping away meant keeping the accomplishments we made over the course of the last few years quiet, and I didn't realize that we couldn't celebrate and share the lessons we learned along our long journey with Isaac with my audiences. I didn't realize that by removing The Isaac Foundation from my life for the time being, I was taking away the real reason I wanted to run for public office in the first place - an intense desire to advocate and represent those in need, thereby making our community a better place for all.

Now, a year later, I regret that I didn't share my experiences advocating for my son with those around me. I regret that I didn't pass on the lessons I learned along the way, and I regret that I pushed aside a large part of who I am due to the mistaken belief that it was dangerous to do so.
Most of all, I regret that I lost site of the things that are important to me.

I regained some of my perspective on life last night when I learned that there is another person in Ontario that is suffering from the same disease that Isaac is battling. We have known about this young man for a while and knew that he was applying to the Ontario Government to have his treatment funded, much in the same way that it funds Isaac's treatment. I had expected the funding to come through for him and for his treatment to begin soon enough, but I learned last night that his application for funding was turned down by the government, a fact that clearly caught me off guard.

I am troubled by this decision by our government for a number of reasons, not the least of which is that our provincial and national health care systems are supposed to work for ALL Canadians. This young man needs treatment and I find it appalling that a treatment that is funded for Isaac would be denied for someone else. More importantly for our family, this latest piece of news leads me to believe that it isn't out of the realm of possibility that funding for Isaac might be taken away at some point as well - something that I can't and will not allow to happen.

In an instant, all that we have worked for and all the difficult moments we went through came crashing back to me and I was afraid again. Afraid for Isaac and his future, afraid that battles won long ago might come back and put us into fighting mode all over again, and afraid that we have grown too comfortable over the past while and that we forgot what we're truly facing.

Perspective is a sneak, and it comes at you when you least expect it. But I'm glad it found me last night and gave me the chance to take stock of what's important to me in my life. I'm glad it gave me pause to remember to enjoy everything we have now to the fullest, because we never know what lies ahead.

If and when I return to the political scene, I'm going to do it differently and ensure the lessons I've learned along the way can be shared with those around me. For now, though, I'm going to take all the good that this summer with my kids has to offer, and enjoy each and every moment.

I plan on contacting the family of the young man that was denied treatment this week and, if they need me, I will ensure I work hard to push their case forward with the government and ensure his treatment is funded. I'll keep things updated as I know more.

Anyway, should sign off for today. Below is how we spent our day today - Isaac and Gabriel put on a full John Mayer concert for me. Can't wait to see what tomorrow brings!

Thanks for your continued support. I promise to write more, even if there's nobody out there reading!
A.

Saturday, June 26, 2010

Brandy and Roy Halladay - Thank You

Hi Everyone,
I'm truly sorry that it has taken so long to update - things have been busy with our golf tournament and our RUN FOR ISAAC! event at the Ottawa Race weekend. To add to all of that, we are planning our 1st Annual Isaac Foundation Gala for October 1st. To say the least, time has been short for updates.

However, I thought I would take a moment to write a few words about Roy and Brandy Halladay, two incredible people that took the time today to give Isaac and Gabriel a special day at the ball park.

Roy Halladay is, arguably, the best pitcher in Major League Baseball today. He has achieved almost everything that a professional baseball player could hope for, including pitching a very rare perfect game last month. However, it's not his skill and stamina on the playing field that makes Roy Halladay a special person; it's what he does off the field.

During his 12 years in Toronto, Roy and his wonderful wife Brandy created a special box at the ball park called Doc's box, which they used to host children from the Hospital for Sick Children on a regular basis. They would take the time to ensure all the kids were
comfortable - Brandy would sit and watch the game with the kids and Roy would arrive before the game, sign baseball hats, balls, and pose for photos with the children. It was at Doc's box that Isaac met Roy and Brandy for the first time. Brandy spent a lot of time with us and, I believe, fell in love with Isaac.

The following year, Roy decided to donate his Toronto Sportsman of the year award to The Isaac Foundation and Brandy organized a special on-field presentation to our organization. The Blue Jays showed our DVD on the big screen at the game and Isaac got to throw out the first pitch. More importantly, the boys got to see Roy and Brandy again. Since our visit to Doc's box, Isaac and Gabriel spent a lot of their time watching Roy "Holiday" pitch on television. They were thrilled to connect with Roy again!

Now that Roy is pitching for the Philadelphia Phillies, the boys have to listen to him pitch on the radio. However, Brandy was able to organize another special visit for Isaac and Gabriel, this time in Philadelphia. We travelled the long 8 hour trip yesterday and took in the game today. Isaac made Roy and Brandy a nice picture, and our Foundation made two special baseball jersey's for the Halladay's as a gesture of our gratitude for all they do for our son and the awareness they bring to his
disease and our Foundation.

Isaac and Gabriel waited on the field before the game
during batting practice. The entire time, they kept looking around for Roy as he shagged fly balls in the outfield. Finally, Isaac spotted
Roy coming toward him. He waited, and when Roy saw Isaac a huge smile came across his face. Isaac went running over and gave Roy a hug. From there, Isaac,
Gabriel, and Roy spent some special time together chatting and having fun. At the end, Roy let both Isaac and Gabriel pitch to him (it was something the boys REALLY wanted to do before they left). All in all, it was another special moment for our kids and I couldn't be more thankful to the Halladay's for making it happen.

The Halladay's are the essence of classiness and they truly personify what celebrities should be. They go out of their way, out of true love, to help those in their community that are struggling
and they work to make brighter days for those in need. They are kind, caring, and considerate human beings and they use their privileged position in life to make the world a better place. On the field, Roy goes about his
career and sets an example for others to follow by his hard work, determination, and sportsmanship. He's not in the media for his tantrums, his drug use, or his off field problems, much like many of the players you hear talked about in the Majors. Off the field, it is my hope that baseball fans in Philadelphia realize the real treasure they have in the Halladay family and appreciate and celebrate them in the fashion they deserve.

I know that Roy will produce on the field for the Phillies for many years to come; I hope he will even bring them another World Championship trophy, a Cy Young award, and more perfect games. But, at some point, the contributions that Roy will make on the field will come to an end, and he will immediately be remembered as one of the best pitchers in Major League History.

Long after baseball is over, Roy Halladay's legacy will live on in those he has connected with off the field. The kids that he has made smile, the families he has helped get through difficult times, and the ones he has inspired, Isaac included, will all be better people because of the difference he has made in their lives.

Thank you, Roy and Brandy Halladay, for taking the time once again to create a special memory for my kids. We appreciate your generosity and kindness, your care and compassion, and your genuine ability to make this world brighter for those around you.

Your kindness will never be forgotten.

With Love,
A.


Monday, February 15, 2010

The Heart of Life





Hey Folks,

We just got home from a fabulous family weekend away in Toronto. The Ontario government sure got it right by giving us a Fa

mily Day Long Weekend in the middle of February! We had fun with the boys, heading to the Ontario Science Centre, eating out for dinner, swimming, sleeping in a hotel, and just having some dedicated time together.

The highlight, by far, was our trip to the John Mayer Show at the Air Canada Centre. As many of you know, Isaac has been a John Mayer fan since his very early days and we have been fortunate to have John treat him to a few shows and stay in contact since their first meeting two years ago.

Isaac was excited about the opportunity to say hello again. He spent some time making him a Valentine during the week and was looking forward to taking in the show and seeing his hero on stage once again. And we were excited, too. However, nothing could have prepared us for what was to come on Sunday in Toronto.

The initial plan was for Isaac to join John for his soundcheck so that Isaac and John could sing “Half of My Heart” together on stage. But things had to change this week - apparently John was embroiled in some sort of media storm ;) On Saturday night, we got word that John could see Isaac back stage so the two could reconnect, so we headed to the show with a thank-you gift bag for John and his wonderful manager, Ken Hellie. Isaac wanted to give John a music CD/DVD of one of his other favourite singers, Canadian Danny Michel, an Isaac Foundation hoodie, and, of course, the Valentine that he and Gabriel worked so hard on during the week.

Backstage, John was just as wonderful as he was during previous visits, taking a lot of his time to answer Isaac’s questions and be a genuinely good friend to our son. Isaac began by trying to show John the picture he drew for him on my iPhone while we waited in line, a picture of a dark, starry night and a pink planet with a ring around it. It somehow got erased as we approached, but Isaac took the opportunity to show John his (my!) phone and play around on it for a while. Next, Isaac had a few questions that he wanted to ask - questions that he has been storing up since the last time he had the opportunity to see Mayer. His first question was “how do you remember all the words to the songs?” John gave him a lengthy answer about having things written down, which seemed to please Isaac.

The next question was something that Isaac has been wondering about for a long time - mostly because he is always giving music concerts here at home with Gabriel. He wanted to know what John Mayer would do if he needed to cough during a song. John laughed and told him that he would simply go “off-mike” during some music. After explaining what “off-mike” meant, he then started to have fun with Isaac and told him that the hardest thing was trying not to burp during a song. He told him that sometimes he might have a burp on the way and he would get afraid that if he sung a high note or that if he sang a certain way that the burp would come out. Isaac thought this through for a little bit and then exclaimed “why don’t you just delay your concert until you have finished your burp?!” We all broke out in laughter and John was literally on the floor laughing at Isaac’s simple cure to John’s predicament! To follow up, Isaac stepped back, put his hands on his head (his common “thinkers” pose) and finally said “I think you could just burp into the microphone tonight!” - A truly precious moment.

John had to get warmed up for the show, so Isaac’s time with Mayer was coming to an end. Isaac gave him his present and the two posed for a picture together. Mayer told Isaac that he was going to keep his Valentine with him, which brought a smile to Isaac’s face. From there, John and I had a chance to speak together about Isaac and our other son Gabriel. We also talked about the previous week - a conversation that I wish to keep to myself. I truly respect the man and feel that personal conversations should remain just that - personal.

We headed back down the hall and to our seats. Suddenly, Isaac went running back down the hall and calling to John. Mayer came back and Isaac said “I’ll know you’re thinking about me when I see our heart on the stage.” For a moment, John and Isaac just stood smiling at each other, an image that will last with me forever. Whether it was another moment of perspective for John, or simply a sweet moment shared between two people, watching the two together brought me incredible joy and feelings of immense love.

At the show, our seats were great - side stage and very close. Isaac and Gabriel put their ear plugs in and got ready to dance and sing to their favourite songs! And Mayer didn’t disappoint! All the boys’ favourite songs were played, including what Isaac and Gabriel say is “the loudest song of the concert” - Heartbreak Warfare. John gave a great show and interacted with the crowd most of the night. At mid-show, John took out his Valentine heart from Isaac and showed it to the crowd. Isaac beamed with excitement! And it wasn’t because 14,000 people were seeing the card that he made for John. It wasn’t because Mayer was speaking about him during his concert. It wasn’t even because he had people looking back at him as John told his fans about his pal. Isaac beamed because his friend and hero brought his Valentine onto the stage, something he promised to do. Isaac beamed because he knew that John was thinking about him, just like he said backstage. John told the crowd that Isaac said something to him backstage that “changed his day, his week, and possibly his whole life” and then recalled that moment when Isaac went running back down the hallway to him.


The rest of the show was wonderful. At one point, Isaac was playing air-guitar in the aisle and Mayer hopped up on his speaker and ripped into a guitar solo. For quite some time, the two were watching each other (John waved at Isaac) and playing their guitars - both content beyond belief. At the end of the show, John told the crowd about Isaac and where people could find information about where to help. He hopped off stage and immediately tweeted to his followers about where to find Isaac online.

In less then a day, we have have received over 40,000 hits on our Isaac Foundation website. We’ve been contacted by people throughout the world with words of encouragement, love, and support. People magazine linked to our blog entry and countless organizations are weighing in on the show in Toronto and Isaac’s involvement with John.

The majority of the press has been positive. However, there are a select few organizations and media outlets that say John is “latching” on to our organization to clear his name and look like a stand up guy. Obviously these organizations didn’t do their research to realize that this kindness isn’t anything new for Mayer. John has been with Isaac for some time now and genuinely wants to help.

In my mind, anyone who would take this incredible night and try to minimize it as a publicity stunt is disgusting, arrogant, and writing with blinders on. Mayer wants nothing but to increase the quality of life for our little boy. He wants to make a difference because he know he can. This isn’t an attempt to calm the tide.

To those of you who are blogging and writing, I ask you to think about these things before hitting the “send” button on your opinion piece - Is it so wrong to want to help us find a cure for a ravaging, very rare and debilitating disease that threatens our son’s life? If you could help provide hope for the future of a little boy, would you? Mayer wants to make a difference for our son, and he is in every way possible. This isn’t about anything but wanting to help.

Ellen and I will forever be in debt to John Mayer for the special way he treats our son and our family. This has been a long and difficult journey for us. We’ve never given up hope, even through some of the most difficult and dark moments of our lives, and I would never wish this journey on anyone. But if I had do it all over again, I would. We are blessed to have the family we have, and the love we get from our boys is indescribable.

To finish, I want to send out a lyric from one of John’s songs entitled “The Heart of Life”. During the first days of our journey, I often found myself wondering how we were going to find a way to save our son from the terrible fate that lay before him. As always, I turned to music and found this from Mayer: “Pain throws your heart to the ground / Love turns the whole thing around/ No, it won’t all go the way it should / But I know the heart of life is good.” During those early days, these words gave me hope when hope seemed lost; they gave me the strength to carry on, and they showed me that nothing good was going to come from us waiting around for something to happen. These words gave Ellen and I the perspective we needed to begin this charity and find a way to help our son. Now, 3 years later, these words show me that Mayer was right - The heart of life IS good. And I know that Mayer believes this too, and he demonstrates it each time he connects with Isaac.

I hope the media pick up on the good that John does. He deserves for the world to see the real person; the person behind the mask and the walls he’s felt he’s needed to put up over the years. I want the world to know how caring and compassionate he is. I want the world to know that he believes in Hope, and the Heart of Life, and that there is a future for Isaac. I want the world to know that he’s helping us find a cure; he’s helping us save our son.

But, in the end, if the media doesn’t print the good in John, it doesn’t matter. We know, and John knows, and sometimes that’s all that truly counts.

Thanks, as always, for your support.

With Love,

Andrew

The Isaac Foundation



Thursday, February 11, 2010

In Defense of John Mayer


Hey Everyone,

Things are going well for us here at The Isaac Foundation. We are in the midst of planning our RUN FOR ISAAC! event at the National Capital Race in Ottawa again this year and are beginning to invite celebrities to our Golf Tournament, which will take place in June again at the Rivendell Golf Course in Verona, Ontario. In addition, we are in preliminary talks to host a gala event in Cobourg sometime this summer or fall! I hope to get some more information on the website sometime this weekend.

I thought I would take to our blog to write a quick defense of John Mayer, someone that I have grown to respect for the kind, caring, and compassionate person that he truly is.

I don’t care what Playboy Magazine writes about the man, and I don’t care what John says to the journalists that write what they do about him. In America, it’s all part of the game - get in People Magazine, light up the blogosphear, stay relevant - end of story.

I recognize that John plays the game better than most because he’s one of the most written about celebrities on the planet. I know he has said things that turn people off. I know he’s said things that make him sound like someone you would never want your children around - ever. But I also know the person that he truly is and the good things he tries to accomplish with the celebrity status he’s achieved.

Although I’m clearly a biased individual, the wonderful things he has done for my son Isaac stand out as some of his best charitable work. And I feel that he does it out of a true love for our son and the hope to help us find a cure for him. The genuine time he gives him during his stops here in Canada, the warm reception he gives Isaac each time he sees him, and the special way he makes my son feel is something that I will always appreciate the man for.

And for Ellen and I, the feeling of hope he gives us and the feeling that we are making a real difference on the road to finding a cure for Isaac is all that matters. Write what you want about John, think what you will, but before you hand down your verdict on what kind of person he really is, please consider the good he has done in his life.

I’m typing this away as I snuggle up with the boys. They had a fun day at the hospital, came home and made John a Valentine to give him on Sunday. They are looking forward to seeing John at his concert in Toronto. A few minutes ago I asked Isaac to tell me three words he would use to describe John and he responded “Nice, Friendable, and Loveable”. Print that bloggers, and give John his fair shake.

With Love,

The Isaac Foundation


Wednesday, November 25, 2009

WE'VE MOVED!

Our blog has been moved! Please update your RSS feeds and direct them to:
http://www.theisaacfoundation.com/The_Isaac_Foundation/Blog/Blog.html

Warmest,
A.

Love, Laughter, and Hope


Hey Everyone,

As I type away at our blog, one of the first entries of our new website, I’m sitting in the playroom at The Hospital for Sick Children in Toronto. My boys are playing together while Isaac receives his weekly Enzyme infusion, a treatment we worked so hard for him to get, and something that is keeping him afloat until we can find a cure.

The boys are tired after a long night in Toronto. John Mayer was in town to launch his latest album, Battle Studies, and Isaac was anxious to reconnect with his hero, friend, and favourite musician. We contacted John and he arranged for our family to have some guest passes to watch the show and say hello before he took the stage.

Since hearing the news last week, Isaac and Gabriel have been VERY excited! They worked away at making a card for him, and then spent the night before the show before putting together a special craft that they could give to him as thanks for taking the time to say hello.

Since the new CD came out, the boys have been taking every opportunity to listen to the new music. They were thrilled to watch the online concert from New York last week and they jumped around and sang for the entire concert! Their favourite song is “Half of My Heart”, a song that, of course, features Taylor Swift, another of the boys’ favourite singers. When Mayer sang the song during his online concert, Isaac was puzzled to learn that Taylor Swift would not be there to sing her part. “Well, who will sing it?” was the question he kept asking. He decided that he would be the best candidate to replace Taylor Swift and proceeded to make his card for John with that very picture inside, with John singing his part and Isaac singing Taylor’s part.

Isaac and Gabriel also thought it was pretty funny to see John standing on a carpet while he was playing his guitar onstage, which provided the inspiration for their craft. They worked hard to make a pop-up card for him. When the card is opened, John, Isaac, and Gabriel pop up on stage. Of course, all three of them are singing and playing guitar on their very own carpet. To say the least, it was an exciting week and fun week at home during the lead up to the show.

Heading into the show, we didn’t really know what to expect. The last experience for Isaac was incredible, and Mayer was so kind and caring that it was hard not to think about how disappointing it could be for him if he didn’t get the same warm reception this time around. We fully understood that John is a busy person, and this concert was the kick-off to his new album in Canada, so we prepared Isaac that John might not have that much time to spend with him and even a quick hello would be very special. But once again, John showed how truly caring and compassionate he is and gave Isaac (and Gabriel!) another life-long memory.

Walking backstage, we joined the rest of the Meet and Greet winners and waited for everyone to be finished with their photo-op with John. Isaac and Gabriel stood at the back of the room and watched with huge smiles on their faces as Mayer posed for a picture with each group. When John spotted Isaac at the back of the room, he flashed a bright smile before returning his attention to the Meet and Greet group. He took the opportunity to sneak another smile and wave at Isaac before it was our turn and, upon seeing this, Isaac went running across the room to Mayer and gave him a big hug. It was, perhaps, one of the sweetest things I have seen in a long time! Gabriel soon joined them and the boys presented John with their cards and craft.

Mayer spent a lot of time talking with Isaac, joking around, and genuinely enjoying the visit and the opportunity he was providing our young son. And Isaac finally got to ask him what he was going to do for Taylor Swift’s part during “Half of My Heart”! John responded that he was going to let someone else in the band sing the part which, I thought, would disappoint Isaac. But, Isaac being Isaac, he brought us all to hysterics when he responded, “Well. Maybe we should unplug their microphone so nobody can hear them and I could come in and sing the Taylor Swift part instead!” After the laughter subsided, John invited Isaac to his soundcheck in February to sing the song with him on stage; a truly generous offer. He then started singing the song, with Isaac filling in Swift’s part. This will be a memory we will cherish forever. I quickly snapped a photo with my cell phone, which I’ve posted on the right. As show time approached, our visit ended and John headed to the stage. Our family headed up to the VIP section to watch the show - Gabriel made it through 1/2 of it, Isaac watched it all, including the final song of “Friends, Lovers, or Nothing”, which was dedicated to Isaac. The marvellous show capped off an incredible night.

For me, the most special part of the evening was when Mayer remarked on how healthy Isaac is looking. And he’s right. Isaac is as healthy as he has ever been and we are thankful every day for that. Not a moment goes by when we don’t realize how lucky we are to have him in our life and to understand how far he has come since we began this battle. But we’re also very careful not to get too comfortable - you never know what the next doctor’s appointment will bring, or what the next test will say. We’ve gotten too comfortable before, and the pain comes back that much quicker if you forget what you’re fighting. We were able to tell John about the exciting research we are funding in Australia and New York City and our hope that one of them will lead to a cure.

I was very impressed with John Mayer last night. He took the time and effort to provide Isaac with another positive life experience and showed us that he is an incredibly caring and compassionate person. He made our son feel special and showed us why he truly is a role-model we can be proud of for our kids. Say what you want about John Mayer (and many of you will), but from what we have seen of him shows us that he is nothing but one of the kindest, sweetest, caring people we know. Tabloids and newspapers seldom write about the good in people; I guess it’s not what the world wants to hear. But John Mayer is more than what you see on TV or what your read about in magazines - he’s a kind, caring, man who has made a dramatic difference in our lives.

For Ellen and I, his kindness reminded us that we still have Hope for a cure. We’re a small family, working at a small charity, raising small amounts of money, but we’re fighting the war of our life. Sometimes we forget how far we’ve come and the inroads we’ve made in order to make a difference in Isaac’s life and find a cure for him. Seeing how loving John was with Isaac reminds us that we’re not alone - we have others dreaming for the same thing we are, and I know that John will be there with us along the way to help make those dreams come true.

Our motto at The Isaac Foundation is “Love, Laughter, and Hope”. Last night we saw and felt all three in John Mayer, and it couldn’t have been better. Thanks John.

And Thank you, as always, for your support.

- Andrew


Thursday, November 19, 2009

Mayer Revisited

Hey All,
Sorry it's been so long since our last update. We had a long summer on the election trail and are just settling back into a normal routine now.

This will also be a quick post to let you know we will be re-launching our website this weekend and we are quite excited about it!

On Tuesday, Isaac and Gabriel will have the opportunity to say hello to their hero, John Mayer, in Toronto again. They are thrilled! As I type away, they are watching the online webcast of his live concert from New York. We'll be sure to update after the show on Tuesday.

Thank you for staying with us over the years. Your support has helped us make a difference in Isaac's life and we can't thank you enough.

See you this weekend,
Andrew

Sunday, June 21, 2009

THANKS!


Hey Folks,
Very quick post today, just wanted to extend a sincere thank you to two students from Kingston, Ontario for their kind, caring, and sincere effort to help find a cure for Isaac.  Kelvin and Alex took a week away from their recess breaks (the best time at school for kids!) to sell books that they made.  All proceeds went directly towards The Isaac Foundation.

Empathy is the most difficult emotion for children to understand.  It's clear that Kelvin and Alex truly understand.  Thanks, boys!

Best,
A.

Thursday, April 30, 2009

An Update, with Thanks.


As I type away at this long overdue blog entry, I am sitting on a plane to Vancouver, eager to take my place as a delegate at the Federal Liberal Convention.  The time alone, the dim lights of the airplane, and the beautiful view out my window have finally allowed me time to look back at the past few months and reflect on where we are on this long journey and look forward, just a little, to see what the future holds for us.

Thankfully, Isaac continues to be in excellent health and is, perhaps, as healthy as he has ever been.  He continues to grow, his joints appear stable, his heart condition has improved and his breathing sounds less laboured.  He continues to thrive in his Kindergarten class, under the watchful eye of his wonderful teacher, Ms. Rutherford.  Isaac craves knowledge, and he enjoys the people that feed that craving.  His love for life is very evident and his laughter infectious.  Watching him play with his brother, his best friend Gabriel, inspires us and warms our hearts. 

There isn’t a day that passes when we aren’t thankful for everything that we have in our lives.  While this journey has been incredibly difficult, it has also been a rewarding experience that we cherish.  We have been able to learn valuable lessons about ourselves and bond as a family in ways I had previously never imagined possible, and we learn more and more each day.

The past few months have been busy as far as Foundation work goes.  We worked hard on our Christmas mail-out campaign and were blessed by many generous donations to our organization and our fight for Isaac.  We appreciated all the kind notes that came our way and enjoyed the opportunity to update our supporters about Isaac and our fight for a cure.  In addition, we continued to grow our support base, inform the public about MPS VI and advocate and support families across the world that are, unfortunately, beginning the battle we are now fully entrenched in.

We fully recognize that it is harder to manage this fight for our son without the support of our friends, family, and the broader community around us.  Our volunteers have been instrumental in keeping our momentum moving forward and, as National Volunteer Week kicks off, we would like to thank all of you that have worked so hard to keep us going.  The long nights and early mornings spent planning and implementing our fundraising events are made easier with your involvement.  From the marathon runners and family walkers at our RUN FOR ISAAC! event, to our dedicated team at the celebrity golf tournament, to my group of grade 8 envelope stuffers, please understand how much we appreciate the impact you have on our lives.  I wish we could recognize you more for the work that you do and we look forward to celebrating with you when we finally find a cure for our son.

Special thanks needs to be extended to two such volunteers, Alix Hall and Jasmine Ma., for their efforts organizing the Victoria Hall Charity Run for Isaac this past March.  The event was an incredible success, thanks in large part to the dedicated efforts of Alix and Jasmine.  Because of their determination, their small event turned into a large gathering of support for The Isaac Foundation.   Their efforts helped to raise over $1700 and help us pave the way to fund more innovative research into finding a cure.  Both Isaac and Gabriel attended the event, cheered on the runners, and charmed their way into the hearts of many new supporters.  I won’t soon forget the beautiful image of my two boys running to meet Ellen as she raced towards the finish line.  Thank you Alix, and thank you Jasmine for your work, for your drive, and for your desire to make a difference.  It may be overdue but please understand how heartfelt our appreciation is.

Our recap of the first quarter of 2009 cannot be complete without recognizing the tremendous support we received from Toronto Blue Jays Ace and Major League All-Star Roy Halladay, and his compassionate wife Brandy.   Roy was selected as the Toronto Sun Sportsman of the Year for his generous work in the community.  Part of his award was a donation to the charity of his choice and he selflessly selected The Isaac Foundation.

We were fortunate to meet Roy and Brandy during our 2008 visit to Doc’s Box, a private suite at the Roger’s Center that the Halladay family provides to kids from the Hospital for Sick Children in Toronto.   They have renovated the suite specifically for the benefit of the children and both Roy and Brandy work hard to ensure that sick children are able to escape reality of the harsh world around them for a few hours and watch the Blue Jays play from the comfort of their box.  Roy ensures he takes the time to visit the children and their families before game time, signs balls for the kids, and answers their questions about his life in the the Big Leagues.  Brandy, ever patient, kind, and considerate, watches the baseball game with the families and ensures that she provides a warm and comforting environment for all of her visitors. 


During our trip in July 2008, Brandy and Roy were able to provide our family with some much needed downtime in their suite.  We had just finished our week-long stay in the hospital and received our invitation to watch the game from Doc’s Box.  It was here that both Brandy and Roy made a special connection with Isaac and Gabriel and it was here that the Halladay’s support of The Isaac Foundation began.  From here, Brandy and Roy advocated for our son and our organization, vowing to bring awareness to our cause and our tireless hope for a cure.  Brandy worked to promote The Isaac Foundation during telecasts of the baseball games and stayed in contact throughout the ball season in order to get updates on Isaac’s health.  At the same time, Roy became a hero for Isaac and Gabriel as they watched him pitch on the television screen.  The look up to him and enjoy seeing him play baseball and they pretend they are both “Roy Holiday” as they learn to throw and catch a ball of their own.

Roy has, in my eyes, also become a mentor, but not because of the magic he works from the pitcher’s mound.  While he is, undeniably, the best pitcher in the Major Leagues, and he has won countless awards during his illustrious career, it needs to be remembered that there have been many “best pitchers” before Roy Halladay and there will be many more “best pitchers” after him.  He has, like so many others, left his mark on the game of baseball but it is the impact that he has had on the life of our son, the example he sets for those around him, and the perspective he has on life that I truly respect.

Roy and Brandy work to bring joy to those that surround them and they endeavour to provide opportunities to countless people less fortunate then themselves.  They are giving of their time and patient with those in need.  Most importantly, they are parents themselves and they truly work hard to teach their children through the examples they set. They take joy in helping others and pride in their efforts to make this world a better place. They are kind, and caring, and compassionate; they are empathetic and loving, and they encompass all the positive qualities that any parent would want to share with their children.  They have perspective, and they recognize the important things in life.

This was evident for our family during our visit to the Roger’s Center for a special presentation to The Isaac Foundation before the game on April 7th, 2009.  Roy was receiving his Sportsman of the Year Award and asked us to be on hand to celebrate with him.  The sheer joy that came from him as he saw Isaac and Gabriel running toward him is something I will never forget.  The kindness he showed them, the love he gave them, and the genuine excitement he had while interacting with them all stand out vividly in my mind.   Roy Halladay, the person, was being celebrated on that night, and he ensured that our children got to share in the celebration with him.  He took the time to visit with the boys and scooped both of them up in his arms during the video presentation to the crowd.  He truly cared about our children and vowed to fight for our son alongside our family.

Long after his Major League Baseball career has come and gone, Roy Halladay can look back on his accomplishments and have every reason to be proud.  The Cy Young Awards, the records, the strike-outs, and wins will mark his history and his place in the game.  But it will be his accomplishments off the field, the love he has shown their children, the example he has set for them, the lives he’s worked to impact and, hopefully, the part he played in finding a cure for Isaac, that he will forever be defined by.   I’ll take a good person over a good baseball player as a hero in my life any day.  In Roy Halladay, I have both.

Well, plane is now landing and I’m realizing that I’ve been typing for far too long.  This weekend will bring me incredible joy as I follow my dream of standing for public office and follow my passion for advocating for those in need.  I’m glad I’ve had this time to reflect on the past few months and I’m glad I’ve had the opportunity to dream again about our future.

I’ll try to update more regularly.   Thanks, as always, for your support.

With Love,

The Isaac Foundation