I am doing a cycling challenge (100miles) to support research for a cure for Tuberous Sclerosis. This is not going to be easy.
My son Cal was born with this condition. He was diagnosed whilst prior to birth as a result of tumors in the heart. He has since developed tumors in his brain, kidney, eyes and on his skin. As a result he has had seizures since he was 3 weeks old.
The seizure medication he is on worked for the first year of life. Since then he has however had up to twenty seizures a day often hurting himself as a result of the sudden drops associated with them. This is despite him having been on 5 different antiepileptic medications as well as rescue medication which needs to be administered if a seizure lasts longer than 5 minutes . This is known as status epilepticus and can result in brain damage.
Due to these seizures Cal suffers from developmental delay. Altgough he is 3 he has the mental age of 18 to 24 months. He has a helmet to protect him from his seizures. The seizures are most common when he is tired and in his sleep.
We live in hope everyday that a cure can be found for his condition and that his seizures can be controlled allowing Cal to live his life to the fullest potential.
Any support you can provide would be great.
The Tuberous Sclerosis Association (TSA) is the only UK charity dedicated to supporting people affected by Tuberous Sclerosis Complex (TSC). TSC is a genetic condition that can lead to growths in various organs of the body, but those most commonly affected are the brain, eyes, heart, kidney, skin and lungs. When they cause problems it is mainly because of their size and where they are in the body.By supporting me with a vital donation you can be a part of the TSA’s life-changing work....