Never heard of it? That’s the problem!
OK people, if you’re sitting around wondering what you can do to make a darn bit of difference with all of these walkathons but you really don’t have a clue? Here is something that needs some attention.
My good friends Tommy & Peggy Lindsey have a son that is affected by Tuberous sclerosis complex (TSC). TSC is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC).
Ever since I knew Little Tommy, he’s been having seizures. His parents have been through a lot. The increase in awareness I have seen is due large in part by the Lindsey’s.
I’m part of the “Tommy’s Ray of Light” team.
From Peg Linsey’s Page:
“The name of our team is derived from Tommy’s love of Ray the Sun from the children’s show, Bear in the Big Blue House. As you all know, our son Tommy, who is turning 9 this year, suffers from this horrible disease. He has endured 4 brain surgeries and still has seizures. Luckily they occur every couple of weeks, but you never know when that will change. In the area where the surgery was performed, his skull did not fuse. We had to cover the hole with titanium mesh. The mesh is now soft and this remains unexplained.
Tommy cannot speak in sentences yet, but has really been putting more and more words together. He has behavior issues, so dropping to the ground and biting are a common occurrence everyday. This is getting more difficult as he is bigger and stronger.
His little sister Abbey has taught him how to play with others and even some words. She is always looking out for him and tries to protect him, even though she is just about 3 years old!
Tommy may never learn to read or write, but his happiness is our goal. Join us and be one of the Rays that will light the way to a cure. If you can’t join us physically, you can participate by being an angel walker and perhaps contribute to our cause to help raise much needed funding for research for Tuberous Sclerosis. Thank you! “
I’m looking forward to helping in any way I can, hopefully capture some moments of these walkers who are helping bring awareness to this disease.
If you care to join us – great – if you can’t join us, maybe you’ll consider a small donation to sponsor me, this Alliance needs money for research and medicine!
Click on the logo below to sponsor me for the Walkathon for TS Alliance.