Wednesday, May 02, 2012
Saturday, December 03, 2011
Thursday, August 25, 2011
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
Thursday, August 18, 2011
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 betterplace; 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.
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.
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
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.
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
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.
Andrew, Ellen, Isaac, and Gabriel
Friday, August 27, 2010
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,
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,
Wednesday, August 18, 2010
Thursday, August 12, 2010
Wednesday, July 21, 2010
Saturday, June 26, 2010
Monday, February 15, 2010
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.
The Isaac Foundation
Thursday, February 11, 2010
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.
The Isaac Foundation
Wednesday, November 25, 2009
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.
Thursday, November 19, 2009
Sunday, June 21, 2009
Thursday, April 30, 2009
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.
The Isaac Foundation