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

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.

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.

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.

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.

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.

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.

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

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