Thursday, June 08, 2006

Alex's Genes

"Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance or a 1-percent chance, but you have to believe, and you have to fight." Lance Armstrong

This week is devoted to my 10 year old nephew Alex. The boy on the brochure pictured above. The one who has cancer.

We're not the luckiest family in the world when it comes to good health. Members of our family have battled--and in some cases succumbed to--heart disease. Strokes. Diabetes. Macular Degeneration. Immune system disorders. And cancer.

But nobody's had VHL, the dangerous tumor-forming kind Alex has. The kind that's in the genes. Crouching. Hidden. Creating tumors that grow slowly and undetectably. Until they're too huge and life-threatening to miss.

Alex's first tumor, in his brain and ear, showed up when he was 4, a very young age for this disease. VHL typically starts in utero, lies in wait for years, then declares itself in adults. Often by then it's too late. So maybe Alex was lucky his tumor was discovered so early.

And maybe we'd all prefer a different kind of luck.

Alex was the first--and so far the only--member of our family to be hit with VHL. And we'd like to keep it that way.

Since Alex was so young--and because VHL is being discovered more and more in children--the Cancer Research Fund - VHL Family Alliance tells his story in their marketing materials and on their web site. They want people to seek genetic testing. And they desperately need funding for research to prevent and cure this terrible disease.

VHL maims and kills, but it's got a very low profile. We want to change that too. Everyone has heard of Muscular Dystrophy, but how many know that the number of VHL cases closely rivals those of MD?

Alex isn't one of Jerry's Kids. He's one of Alex's Kids. Alex Scott, the founder of Alex's Lemonade Stand.

As I've been telling you all week, this Saturday, June 10, from 10 am to 6 pm, we'll be holding Alex's Alex's Lemonade Stand at the Margate Firehouse.

Come get some lemonade and some critical information about VHL and all childhood cancers.

It could be in your genes too.

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Blogger diary of a genetic defect said...

Gosh, Alex really is young to have his first tumours, i've never heard of it happening as young as that. My dad and I noth have VHL, his first tumour was found when he was about 9, so i'm told. Despite a number of opperations and lots of tumours that sit, unmoving we are both well really. Blessed with good health if you don't count VHL of course. I hope all is well

2:11 PM  

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