The Site for the Cure

Hello, My name is Kim, I live in Maine. I am walking in the Step Foward to Cure Tuberous Sclerosis Complex 3 mile walkathon on June 3, 2007 held in Rye NH. The reason I am walking for TSC is I am an adult that has Tuberous Sclerosis Complex, my daughter Meagen has it as well.

TSC is a rare genetic disorder that causes masses,growths, tubers, and cysts on your vital organs. It often goes undiagnosed and many have mild cases and many have very servere cases of it. 1 in 6000 people have it in the USA. It doesn't care if you are male or female and People from all over the world can have it. There is no cure and the most common aspect of TSC is seizures.

My daughter Meagen started to have seizures when she was 6 months old- To find out what could be the reason for them. The doctors' did tests on her and myself, taking a family history. They found tubers in Meagen's brain, that caused the seizures. They found a mass in my right kidney that turned out to be cancer. I also have growths; periungal fibroids under my finger nails and toe nails, a birthmark ( shagreen patch on my lower back. These were things that dr.s passed as just oddities, and nothing to worry about. This is why I was never diagnosed until I was 32. In 2004 my right kidney was removed along with the cancerous mass. In in 2005 1 day before Meagen's 3rd birthday she underwent Brain surgery to remove the tuber in her brain that was causing the seizures. Since then she has not had any seizures. As she gets older she can have other growths appear on any other vital organs- this will be the rest of her life thing. I know have stage 3 chronic kidney disease and I have a cyst on that kidney a cyst on my liver and possible lung involement.

We are considered to have a mild case of TSC, There are many others out there, children and adults that suffer far more than we do. The spectrum varies; From severe seizures to Autism, Mental retardation, to behavioral issues,developmental delays and other organ involement. People have died due to the complications that TSC can cause, and many have to live their lives either under constant care of their parents or in assistive living facilities. Finding a cure would help everyone with this disorder. Meagen and I are fortunate to live relatively normal lives.

You can get more information at www.tsalliance.org

I would love to have you sponsor me and my daughter in this walkathon or just give a donation so that research can continue to find a cure.

You can email me at toomuchclutter2@verizon.net

Thank you for your time

Kimberly Leonard
34 w/ TSC mom to my little redheaded angel Meagen 4 w/TSC