The following is from my niece Mary. It speaks for itself.
HI!!! My name is Mary Hable. I’m over four and half years old. I live in Lino Lakes, MN with my Mommy and Daddy and two kitties, Chippy and Sophia. I have Tuberous Sclerosis Complex (TSC). TSC has caused things to grow on my kidney, heart, skin and my brain. The things growing on my brain are called tubers and they have caused me to have seizures since I was born. I have been on over ten different kinds of pills to try and stop my seizures but they haven’t worked all the way. About two years ago, I had surgery to remove four of the tubers from my brain and some of my brain to hopefully stop my seizures. It worked for three months. I still have some seizures but they aren’t as bad as they used to be. When I wasn’t even a year old, I was having really bad seizures, sometimes for more than ten minutes each. They made me and my brain tired. Because my brain was tired all the time, I couldn’t learn as fast as other kids. Even though I’m over four and a half years old, I can only do about what a two and a half year old can do. I started walking three weeks after my third birthday. I can’t talk very much but I understand just about everything. I know some sign language too, like “help”, “please” and “potty.” I still wear diapers even though I can go on the potty if I want to. I go to school with other kids that are behind and we have lots of fun.
About one in six thousand people are born with TSC. That’s more than have Lou Gehrig’s disease. The affect on everyone is different, from not even knowing they have it to death within moments of birth. Most people with TSC have seizures and growths on their skin. There is no cure for TSC. Please help me raise money for TSC research so maybe one day all people born with this disease can live typical lives or better yet, people will never again be born with it. We have a long way to go but with your help, I am sure it can happen. Thanks and I Love You! Bye!
3 comments:
Aunty Rebecca:
Thanks for posting my story. If any of your friends wants to make a donation, they can send a check made out to TS Alliance to:
Mary Hable
1395 Timberwolf Circle
Lino Lakes, MN 55038
Or they can try to go to this link:
https://ecommunity.tsalliance.org/NETCOMMUNITY/SSLPage.aspx?&pid=302&srcid=302&frdashid=3
Hopefully that works. They can make a credit card donation on line. We take Euro, Lire, Drakma, Yen, etc. We'd even take one of those giant Easter Island heads if they can ship it to us.
Thanks again,
Mary
Dear Aunty Rebecca:
Thanks for posting my story. As you know, I will be walking in our annual walkathon in May to raise funding for TSC research. If any of you frined want to make a donation, the can send a check made out to TS Alliance to:
Mary Hable
1395 Timberwolf Circle
Lino Lakes, MN 55038
Or they can try this link:
https://ecommunity.tsalliance.org/NETCOMMUNITY/SSLPage.aspx?&pid=302&srcid=302&frdashid=3
and make a credit card donation on line.
Thanks for your help. I can’t wait to see you soon. Love,
Mary
Thank god I now can see it! It's great that you are posting it up on the blog, I can link yours to mine now haha!~
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