Just last March, my 3-year old nephew Gavin was diagnosed with Tay-Sachs Disease – an extremely rare fatal genetic disorder that progressively destroys the brain and nervous system.
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| (This is Gavin taken March of 2008.) |
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Even though Gavin was a laid back child, he seemed to develop normally – doing things any other toddler would like walking, playing, and biking. One thing he never was able to do is speak. But his regression over the past few months is undeniable. He can no longer walk unassisted and is not able to eat solid food anymore – in fact, last week, he underwent a major surgery to attach a feeding tube to his stomach.
Unfortunately, there is no known cure for this disease, no preventive treatment to stop the brain from regressing. According to sources, children with Tay-Sachs usually do not live beyond five years of age – and at this time, all doctors can do is make sure the affected children are as comfortable as possible.
But Gavin’s family and friends are not giving up. As long as the sun rises everyday, and Gavin still breathes, there is hope. Researchers are investigating several treatments for Tay-Sachs, but none have passed the experimental stage yet.
I can’t imagine what Gavin’s parents are going through. Just looking at my two daughters and thinking “What if it’s them?” breaks my heart. And I know I must do something, anything, to aid Gavin’s cause. I’ve decided to organize a fundraiser, as detailed below. All proceeds will be donated to Gavin’s Trust Fund. The trust fund will be used for special equipment and other expenses he will need to make his life as comfortable as possible. In the words of another family suffering from Tay-Sachs – “to give him the best memories he can have”. (I hope they don’t mind that I borrowed their words.)
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HOPE FOR GAVIN
CHRISTMAS CARD DRIVE |
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I thought this time of year is perfect for doing a Christmas card fundraising drive – especially for a very good and urgent cause such as this. (I’m afraid time is against my nephew.) The premise of this two-part campaign is to accumulate funds from selling handmade cards that will be donated to Gavin’s Trust Fund.
Part I
I’m reaching out to the generous spirits of crafty and creative people to donate handmade Christmas cards. For those wishing to participate (and I hope there are a lot of you that will), please post a comment with a valid email address so I can email you the mailing address. You can send as many handmade Christmas cards as you want, and please don’t forget to include an envelope to go with each card. The deadline to participate is November 20.
(If you want to make a card or write a note of support to Gavin’s family, feel free to do so. You can mail it together with the cards you’re going to donate, and I’ll make sure the card/note goes to them.)
Part II
This is where we sell the cards you’ve graciously donated. More information on Part II will be posted soon.
My deepest thanks to everybody who made this fundraiser possible – those who donated Christmas cards, those who donated money, and those who bought the cards. I am truly grateful. We have raised a little over a thousand dollars – not bad, in my opinion – a good enough reason to consider this fundraiser a success. Thanks again so much. In our own little way, we have all helped Gavin. (December 11, 2009)
