Friday, June 3, 2011

Batten Disease Awareness Weekend!

June 3 - 5 is Batten Disease Awareness Weekend

What is Batten Disease? I'd never hear of it until my mom met Kim Fair.

Travis Jack was born beautiful and healthy. Kim & Dean Fair had the perfect family with two adorable, active little boys. When Travis was 3, Kim started noticing that he would occasionally stumble, concerned, they took him to the Doctor. That visit was the first of endless Doctor and Hospital visits. Travis was diagnosed with epilepsy and treated. But when things didn't get better, there were more and more tests. Two years went by before Travis was diagnosed with Late Infantile Batten Disease. For nearly 6 years Kim and Dean watched their precious son's health deteriorate until his life ended prematurely just before his 9th Birthday. He was wheel-chair bound, blind and fed via tube. But....he loved to snuggle and he could light up a room with his smile! No disease is good, but some are more cruel than others. After hearing Travis' story I went on line to read up on the disease I'd never heard of. Batten Disease is very cruel.

When my mom first told me about Kim's son I felt gutwrenching sorrow. I can't even begin to fathom having to watch my child slowly die knowing there wasn't a thing I could do about it. Neither Kim or Dean knew they carried this gene!

I encourage you to go to the website below and read about it yourself, then help others become aware of this horrible disease! Kim never wants another child to suffer like her Travis did and no parent to experience what her and Dean had to. BDSRA not only does research, but has an incredible support system including a medical equipment exchange. Batten is not well known, research needs to be done. I looked at their budget and very little goes to administration!

Again, I encourage you to visit the website and maybe even make a donation in memory of Travis Jack Fair.

BDSRA : Neurological Brain Disorder : Batten Disease Support and Research Association

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