Dear Friends,

Thank you so much for taking the time to read about the disease that has struck our heart numerous times.  This year marks the 9th year we have raised money through "Step Forward to Cure Tuberous Sclerosis," a yearly walk to help raise funds and awareness for TS.

We would like to first introduce you to our "little man", Trey.  For all of you who do not know him or us, he is now 8 years old.  He was diagnosed  with TS on Christmas Eve 2001, when he was only a couple weeks old.  Tom and I had first heard of TS when Trey was four days old, 3 tumors were found on his heart.  We now know that Trey has over 20 tumors on his brain as well as many skin lesions on his body.  He began having seizures when he was 16 months old, he had over 20 in the first couple days.   Many children have 100's of uncontrollable seizures a day, where medications, diets, nor brain surgery can stop them.  When this occurs they never have the opportunity to develop which may lead to a life of learning disabilities as well as retardation.  Through our experience we know there is no black and white to TS, it is all gray, and the unknown of what will happen next and when it will happen is very disturbing.  Trey is very fortunate in the fact that the medication has worked to control his seizure and has only had 3 episodes of seizures in 8 years.  TS affects 1 in 6,000 people.  Each day at least 2 children are born with Tuberous Sclerosis and 2/3 of those affected have no previous family history of TS.  This means that any family has  the potential of being affected. 

TS is a genetic disorder that causes the formation of tumors on vital organs such as the brain, heart, kidneys, lungs, skin and eyes.  The tumors may cause other health problems that are associated with epilepsy, autism, and heart disease, cancer and developmental disabilities. In fact TS is the largest known cause of epilepsy and is now the second largest identified genetic cause of autism. Research funded by the TS Alliance is on the verge of making major discoveries that will have a significant impact on individuals with the disorder.  TSC research will assist in the understanding of cancer, epilepsy and mental retardation.  I hope that you will consider joining us to campaign  for the TS Alliance by serving  as a sponsor for "Step Forward to Cure Tuberous Sclerosis" which will help individuals like Trey who suffer from the disease.  On behalf of our family and all the families affected by Tuberous Sclerosis, I would like to thank you for your thoughtful consideration.

Trey did not choose to have Tuberous Sclerosis.  It chose him.   

Sincerely,  Sharon, Tom, Trey, Tori and Chase Gwinn