Hi Folks,
Just a quick post today. I've been noticing a lot of visitors stopping by our Family Gallery that is part of our main site and thought I'd update things with some current pictures. The gallery can be found at www.theisaacfoundation.com/gallery. But you can also watch the video below. For the record, the quality of the video is a bit better from our site.
Warmest,
The Isaac Foundation
Monday, October 29, 2007
Saturday, October 27, 2007
Back Brace and, Support Us Through United Way
"Everything always works out in the end. And if it doesn't, then it's not the end."
Hi Everyone,
Well, what can I say? What a week. A long, and difficult week. On Tuesday, we arrived at Sick Kids' for our "routine" appointment with the Orthopaedic Specialist to check on Isaac's back. We learned, very surprisingly, that Isaac's Kyphosis, or curvature of the spine, now requires him to be in a brace. And not just a regular back brace. This brace would cover him from neck to waist, front and back, and is a hard-plastic brace. It would prevent him from bending or twisting and would be required to be worn for 23 hours/day for many years.
We were quickly sent downstairs to have the mould made for his brace. Isaac was a trooper as they covered his entire body with plaster to make the mould. Being in a full-body cast certainly didn't take away his sense of humour! But, It was a very upsetting moment and day for us.
We had many conflicting emotions and wondered how we could possibly do this to our boy? How would this affect his quality of life? If he already has a shortened life-span, is this the best course of action? I want my child to have the happiest years that he can, and putting him in a hard-shelled, itchy, hot, and uncomfortable brace for the rest of his life doesn't seem to be something that is going to make him happy. And how will kids at school treat him? And strangers? Will this automatically change the person that he is?
During the last few, difficult days, I sent many emails back and forth to a writer-friend of mine. I told him that I was scared, which I truly am. He asked me what I was afraid of and my response was that I was afraid to live my life without my son. He responded very quickly and very simply. But his response picked me up and gave me the bit of strength that I needed to figure things out. He wrote "Don't worry. Everything always works out in the end. And if it doesn't, then it's not the end."
Anyhow, since Tuesday, we've been doing some digging, talking to other doctors, and doing a lot of research about this. Basically, we've realized that this course of treatment might not be the most effective.
After a long week, we have decided to wait 6 months and re-evaluate the situation at that time and we just received an email from our Dr. supporting our decision. You can never go wrong by putting things off. We'll see just how true this turns out to be in April. Thank you to everyone that has offered your support and words of wisdom.
On another note, as United Way donation time kicks into full gear, I just wanted to let perspective donors know that they can request that their UW donation go to The Isaac Foundation.
Simply write our charitable number in the "other charity" portion of your donation form and your donation will make it to our organization, through the United Way. There have been many generous people and organizations taking this approach and we truly appreciate it.
Our charitable number is 8069 300 79 RR0001.
I hope everyone is well. Please check out our website for our latest fundraising event, "Cuts For Isaac!" You can now order The Isaac Foundation Apparel from our website as well.
Warmest,
The Isaac Foundation
Monday, October 15, 2007
Open Letter To Kitchener-Waterloo Electorate
I know, I know...the election is already over! I thought I'd take a second and quickly upload a letter I wrote to the newspapers in the Kitchener-Waterloo region in support of our friend, Elizabeth Witmer.
We have plans to update the website soon. Sorry for the continued delays...life is crazy lately!
Warmest,
The Isaac Foundation
Dear Editor,
I feel I must begin this letter by stating that I am an outsider. I do not live in the area and, truth be told, have never even visited your beautiful region. In fact, I live more than 3 hours away in the small town of Campbellford, Ontario. However, I have actively watching the political debates across Kitchener-Waterloo since the beginning of the election and feel I am very well qualified to comment on the merits of your incumbent MPP, Elizabeth Witmer.
It has been a very long two years for my family, beginning with the devastating news that my first-born son, Isaac, was sick with a terminal illness called MPS VI. This disease is so rare that there are only 3 known cases in Canada and less than 1000 worldwide. Symptoms include a severely reduced lifespan, stiffening of the joints, mainly the knees, arms, and hands, corneal cloudning, spinal cord compression, and heart and airway disease. Upon initial diagnosis we learned that a life-saving treatment existed in the US but cost almost 1 million dollars per year.
In the beginning, all we had was Hope and, to be honest, we didn’t have much of that either. Having to deal Isaac’s initial diagnosis while continuing to lead our everyday life was a struggle that I do not wish on any parent. Moreover, struggling to understand our political system and secure provincial funding to save our son by searching for help from our local politicians was a stress that was almost unbearable.
The lessons I learned along the way to finding help for my son are vast. I learned that hard work and determination are sometimes not enough if the decision makers choose not to listen. I learned that political will is most often dictated by public pressure than by good policy. And I learned that “compassion” is a word more often quoted than actually experienced.
But Ms. Witmer unselfishly came along and took up our cause. She gave us Hope at the very moment when all seemed lost; and she gave us faith. I will forever remember our first meeting, sitting in her office at the Ontario Legislature. She listened to my plea for help with tears in her eyes and she told me that she was a parent too and that she was going to do everything in her power to help my son. That fateful encounter saved my son’s life and I can never thank her properly for what she has done.
Elizabeth’s determined work in the Legislature has allowed our family to Hope again for the future. While the Liberals did nothing to show their support for Isaac, and while the Liberals showed no remorse for our family situation, Elizabeth Witmer came to the rescue. She continued to push for our cause, knowing that waiting or doing nothing was going to drastically shorten my son’s life. Because of her relentless efforts in the Legislature, the Liberal government agreed to fund the treatment that my son so desperately needed to save his life.
Her kind, caring, and compassionate work changed public policy; something that I was continually told could never be done. Elizabeth changed my belief in the political system and showed me that it is possible for our elected representatives to make a difference in the lives of the people they represent. And that’s the very point I’m trying to highlight. Elizabeth Witmer is not even my elected representative! I had already approached my two area MPP’s, John Gerretsen and Lou Rinaldi, both Liberals. The only thing that came my way from them was delay after delay. Knowing that time was precious for my young son, I reached out to Elizabeth for the help and support that I needed. I researched her track record and realized that she had already worked tirelessly to gain funding for treatment for people affected by Fabry’s disease. Elizabeth came to the rescue of those individuals and she came to the rescue for our son.
Our family is indebted to Elizabeth for what she has done for us. She has changed our lives immeasurably and has given Isaac hope for the future. That's all any parent can ask for - Hope for their children's future. Although we can never repay her for her kindness and support, I hope that she’ll be available for us to send her a card when Isaac graduates from highschool. And I hope she’ll be around for us to send her Isaac's wedding photo, and the announcement of the birth of his first child. And I truly hope she’ll be available to speak at our celebration party when we make the announcement that we've found a cure for this horrible disease. No matter what the future holds, we have one for our son thanks to Elizabeth Witmer.
I am a Liberal but I believe that elections should be about the local people running for office in each of the ridings across this Province. As the election steams into its final week, I hope the readers in your area take the time to realize how truly wonderful their local representative, Elizabeth Witmer, has been for them over the past 17 years and reward her with another victory come Election Night.
Attached is a photo of Isaac, a photo that speaks volumes about what Elizabeth has done for him. It was taken during his first soccer game, a game that we weren’t sure would ever take place. It shows Isaac in his uniform, laughing to one of his new friends as he comes off the field for a break. Please remember that your local MPP played a big role in him being able to play soccer and, ultimately, live the normal life he deserves to have.
Warmest Regards,
Andrew McFadyen
613-328-9136
www.theisaacfoundation.com
We have plans to update the website soon. Sorry for the continued delays...life is crazy lately!
Warmest,
The Isaac Foundation
Dear Editor,
I feel I must begin this letter by stating that I am an outsider. I do not live in the area and, truth be told, have never even visited your beautiful region. In fact, I live more than 3 hours away in the small town of Campbellford, Ontario. However, I have actively watching the political debates across Kitchener-Waterloo since the beginning of the election and feel I am very well qualified to comment on the merits of your incumbent MPP, Elizabeth Witmer.
It has been a very long two years for my family, beginning with the devastating news that my first-born son, Isaac, was sick with a terminal illness called MPS VI. This disease is so rare that there are only 3 known cases in Canada and less than 1000 worldwide. Symptoms include a severely reduced lifespan, stiffening of the joints, mainly the knees, arms, and hands, corneal cloudning, spinal cord compression, and heart and airway disease. Upon initial diagnosis we learned that a life-saving treatment existed in the US but cost almost 1 million dollars per year.
In the beginning, all we had was Hope and, to be honest, we didn’t have much of that either. Having to deal Isaac’s initial diagnosis while continuing to lead our everyday life was a struggle that I do not wish on any parent. Moreover, struggling to understand our political system and secure provincial funding to save our son by searching for help from our local politicians was a stress that was almost unbearable.
The lessons I learned along the way to finding help for my son are vast. I learned that hard work and determination are sometimes not enough if the decision makers choose not to listen. I learned that political will is most often dictated by public pressure than by good policy. And I learned that “compassion” is a word more often quoted than actually experienced.
But Ms. Witmer unselfishly came along and took up our cause. She gave us Hope at the very moment when all seemed lost; and she gave us faith. I will forever remember our first meeting, sitting in her office at the Ontario Legislature. She listened to my plea for help with tears in her eyes and she told me that she was a parent too and that she was going to do everything in her power to help my son. That fateful encounter saved my son’s life and I can never thank her properly for what she has done.
Elizabeth’s determined work in the Legislature has allowed our family to Hope again for the future. While the Liberals did nothing to show their support for Isaac, and while the Liberals showed no remorse for our family situation, Elizabeth Witmer came to the rescue. She continued to push for our cause, knowing that waiting or doing nothing was going to drastically shorten my son’s life. Because of her relentless efforts in the Legislature, the Liberal government agreed to fund the treatment that my son so desperately needed to save his life.
Her kind, caring, and compassionate work changed public policy; something that I was continually told could never be done. Elizabeth changed my belief in the political system and showed me that it is possible for our elected representatives to make a difference in the lives of the people they represent. And that’s the very point I’m trying to highlight. Elizabeth Witmer is not even my elected representative! I had already approached my two area MPP’s, John Gerretsen and Lou Rinaldi, both Liberals. The only thing that came my way from them was delay after delay. Knowing that time was precious for my young son, I reached out to Elizabeth for the help and support that I needed. I researched her track record and realized that she had already worked tirelessly to gain funding for treatment for people affected by Fabry’s disease. Elizabeth came to the rescue of those individuals and she came to the rescue for our son.
Our family is indebted to Elizabeth for what she has done for us. She has changed our lives immeasurably and has given Isaac hope for the future. That's all any parent can ask for - Hope for their children's future. Although we can never repay her for her kindness and support, I hope that she’ll be available for us to send her a card when Isaac graduates from highschool. And I hope she’ll be around for us to send her Isaac's wedding photo, and the announcement of the birth of his first child. And I truly hope she’ll be available to speak at our celebration party when we make the announcement that we've found a cure for this horrible disease. No matter what the future holds, we have one for our son thanks to Elizabeth Witmer.
I am a Liberal but I believe that elections should be about the local people running for office in each of the ridings across this Province. As the election steams into its final week, I hope the readers in your area take the time to realize how truly wonderful their local representative, Elizabeth Witmer, has been for them over the past 17 years and reward her with another victory come Election Night.
Attached is a photo of Isaac, a photo that speaks volumes about what Elizabeth has done for him. It was taken during his first soccer game, a game that we weren’t sure would ever take place. It shows Isaac in his uniform, laughing to one of his new friends as he comes off the field for a break. Please remember that your local MPP played a big role in him being able to play soccer and, ultimately, live the normal life he deserves to have.
Warmest Regards,
Andrew McFadyen
613-328-9136
www.theisaacfoundation.com
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