What is Tuberous Sclerosis TSC
Tuberous sclerosis (meaning "hard swellings") is a rare genetic disorder primarily characterized by a triad of seizures, mental retardation, and skin lesions (called facial angiofi...
Join Now
|
Hey Yall...New here
|
Watch this |
| View More Posts Ignore |
I was surprised to see a TSC group on here!
About us: I'm Heather and I have three kids. They are 5, 4, and 2 1/2. Joe is the youngest and he has TSC. He is mostly non-verbal and we are waiting for him to be tested for autism. His offical diagnosis for now is language delay. He has 100s of brain tubers, 1 in the heart (there were 4), 2 in the eyes, and of course the skin things. Are any of you in the Atlanta area or belong to TS Alliance? The Bounce House in Canton is having a fundraiser in honor of Joe if any of you are close by and wanna come! We are walking Sat May 17th to raise money for Research... Joe has his own little site if yall wanna see him. http://ecommunity.tsalliance.org/N... So, I'd love to hear yalls stories...especially if there are any older people that have TSC. I just always wonder how Joe feels and what he's thinking...and he can't tell me for now, so anyone that has been there that may have advise on what I can do to help him...I'd love it! Posted on 04/27/08, 09:04 am |
| 2 Replies | Add Your Reply |
| View More Posts Ignore |
You'd be surprised what your "lil man" WILL be able to do. Don't listen to those doctors if they don't have anything to actually tell you that could help. Just focus on his strengths and set aside his limitations and he should be fine. 
|
|
|
|
||
| View More Posts Ignore |
My boy is 16 months old today & I wish like mad that there were a crystal ball with TS & you could see what the future holds. Some times I'm glad there isn't as I would not have made it this far seeing the struggles but I hate the unknown.
I hope to get to know some of you moms better in the future!!
|
|
|
|
||
| Add Your Reply |
