 |
Have you heard of Tuberous Sclerosis?
A Letter From the Gwinn Family
We would like to thank you for taking the time to read about the disease that has struck our heart numerous times. This year marks the 9th year that 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. He is 8 years old and was born with Tuberous Sclerosis. He was diagnosed with TS on Christmas Eve 2001, when he was only a couple weeks old. My husband 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 30 tumors in his brain and many skin lesions on his body. He began having seizures when he was 16 months old, after almost a year of being seizure free Trey had his worse seizure ever, this past year he began having seizures again which has increased his medicine intake once more. This year during test a tumor was found on his kidneys which will be monitored regularly. My husband Tom and I have made it our mission to help raise funds and awareness to one day find a cure for Tuberous Sclerosis. Nine years ago, the TS Alliance of New England started what has now become a nationwide event and a million dollar a year fund raiser to help in the research of TS. Tom and I have lead this endeavor for our son Trey and so many other children who are affected by TS. We now have over 30 sites across the United States which gathers many families just like us who are trying desperately to find answers to a disease that has affects our children and loved ones.
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 has been very lucky in the fact that he is developing very well. Many children with TS have as many as 100 uncontrollable seizures a day and may never have an
 opportunity to develop which may lead to a life of learning disabilities as well as retardation. 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. Neither my husband nor I have TS but we not only have a child with TS, we also lost our little girl due to the disease. My husband and I have tried to expand our family but continue to be faced with the obstacles of TS and the genetics of passing it on to our children.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" to help individuals like my son 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.Sincerely,
Sharon and Tom Gwinn
How to make a Donation:
*If you would like to make a donation, you can send a check to: Checks should be made to the TS Alliance c/o Team Trey
19 Captain’s Way
Exeter, NH 03833 Please visit our web site at:
www.tsalliance.org
|