stuff4sam

Message from Sam’s dad

Posted by stuff4sam on September 8, 2006

We’ve all read, with absolute thanks, your message of genuine care and kindness to us all. I can say I am flabbergasted. You have come to our need and kept on giving your kindness over the past year. I can never repay you and you will never fully know how desperate we are and how much your kindness has meant to us. Things don’t get any better at all, but your kindness always being there makes us feel that we have friends fighting for Sam and friends we can fall back on.

Sam is quadraplagic and can’t breathe as a result of the car accident. He was a normal healthy active boy before but because of someones’ careless driving, he is now as he is. We are so very proud of how he has survived, who he now is and how he continues to smile and be so damn strong in spite of everything. He is simply amazing.

The hot weather has made things difficult for Sam as his injury doesn’t allow him to regulate his temperature. This combined with extra secretions and the equipment failing to humidfy him properly exasperated his condition over the summer. It meant that we were effectively housebound for weeks on end and Sam bed bound.

However, we have some good news. Ever since the injury last year we have been trying to get Sam assessed to use a Funtional Electrical Stimulation (FES) bicycle called the RT300-S. It was pioneered in America with Christopher Reeve and his physician Dr McDonald and basically stimulates Sam’s legs with electric currents to rotate the cycle legs and provide Sam with the only ‘exercise’ he will be able to get. It actually makes quadraplagics out of breath and have cardiovasclar exercise. Even though they are not driving the machine, their body responds as if it does.

Basically no child in the UK does this and in America there are only a handful, the youngest being 4 1/2. We had planned to go to America to get Sam to do this at Shriners Hospital (the only place in the world that does this for children), but have manged to get a UK hospital involved and supporting it’s use. There are hundreds of issues and the most important is to make sure it doesn’t do any harm, but it’s a huge effort to get this supported as so many people wouldn’t even listen. Just two weeks ago we visited the hospital again and for the first time in a year we saw Sam’s little legs move the way they should.

His muscles contracted in sequence and drove the cycle around and he looked pleased! Dr McDonald now knows about Sam and will meet Sam when he in the UK to offer guidance. As Sam will be the youngest child in the world to use this new therapy he will follow Sam closely to see the result. There is always a possibility, and it is not yet proven or really spoken about, that this form of exercise could hold the possiblity to stimulate nerve regeration. Christopher Reeve put his functional recovery down to it. Our aim is to get Sam healthy again.

We haven’t yet got the machine, but it’s on order. I wanted to finnish by saying, that if it wasn’t for you, we would never be able to get it. We would not have enough money ourselves and due to the complexities of compensation it would not pay for this. We would be left knowing that it is essential for Sam but that it was impossible to get this amazing new therapy. Thanks to you all and fundraising done by my cousin we have almost the right amout to get it – £14,000. If only you could understand how much this means to us – it is absolutely everything.

Please send our thanks to everyone. We will never be able to repay them – it’s simply too big for words and I am at a loss to thank you enough.

With all our thanks and best wishes.

Neil, Kazumi and Sam

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3 Responses to “Message from Sam’s dad”

  1. m said

    What wonderful news about the bicycle! Getting the support of the medical team and testing the bike for the first time must have been hugely significant milestones. Your strength and determination are a constant inspiration.

    Much love

    madeleine

  2. Debbie said

    It’s good to know that we are able to make some difference to you. My heart goes out to you and your truly amazing little boy.

    Sam has inspired us all to do so much in the last year and we are often overwhelmed by the love and generosity of both RNIB colleagues and our friends. People who have never met you are moved to give in so many ways. We will be doing more events soon and we promise to carry on raising the money to provide Sam with the equipment he needs. With love and every blessing. Debbie

  3. eleanor said

    I wish to add that your words reminded me of what my parents went through when they saw me surviving through polio nearly 45 years ago when I contracted polio. I know how very hard it is for parents to watch a child going the kind of accident as Sam had.
    My parents never got the kind of support as you did (they were very young and those were the preinternet times). I am so glad to be able to contribute the little I did. I am glad that it will make a difference – one thing that stood me well through the years is the knowledge that my parents loved me – that they made all sorts of sacrifices for me and that is one gift that everybody here gives Sam – that he is obviously loved and cherished.

    warmest wishes,
    eleanor

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