Amy Gray
Amy's Raising money for Max - Tough Mudder
Fundraising for EKCT
Story
Hi there, my sister and I are doing Tough Mudder
to raise money for a little boy named Max.
Max is just 13 years old and suffers from a form of epilepsy called Lennox-Gastaut Syndrome. He was just living a normal happy go lucky life as a 4 year old when he had his first seizure in 2004, his and his family’s lives changed literally overnight. Max now has to have constant supervision at all times, the simplest of tasks can’t be performed on his own in case he takes a seizure and hurts himself.
We are raising funds to send him to a world renowned specialist based at Miami Children’s Hospital in paediatric neurology to stabilize him and either worst case scenario cut down on the amount of seizure’s, if not eradicate them completely. Any help in fundraising towards achieving this goal is very much appreciated.
The goals of treatment for patients with Lennox-Gastaut Syndrome (LGS) are the same as for all patients with epilepsy: the best quality of life with the fewest seizures (ideally, none), the fewest adverse treatment effects, and the least number of medications. His parents are desperate for these things to happen as well as to increase his life expectancy, his quality of life and to give him some independence as he has none whatsoever at present. Thank you for taking the time to read this. If you could pass on the news of what we are trying to achieve we would greatly appreciate this.
Any donation would be extremely helpful to raise the money needed.
Thanks!
Amy and Amanda
Max is just 13 years old and suffers from a form of epilepsy called Lennox-Gastaut Syndrome. He was just living a normal happy go lucky life as a 4 year old when he had his first seizure in 2004, his and his family’s lives changed literally overnight. Max now has to have constant supervision at all times, the simplest of tasks can’t be performed on his own in case he takes a seizure and hurts himself.
We are raising funds to send him to a world renowned specialist based at Miami Children’s Hospital in paediatric neurology to stabilize him and either worst case scenario cut down on the amount of seizure’s, if not eradicate them completely. Any help in fundraising towards achieving this goal is very much appreciated.
The goals of treatment for patients with Lennox-Gastaut Syndrome (LGS) are the same as for all patients with epilepsy: the best quality of life with the fewest seizures (ideally, none), the fewest adverse treatment effects, and the least number of medications. His parents are desperate for these things to happen as well as to increase his life expectancy, his quality of life and to give him some independence as he has none whatsoever at present. Thank you for taking the time to read this. If you could pass on the news of what we are trying to achieve we would greatly appreciate this.
Any donation would be extremely helpful to raise the money needed.
Thanks!
Amy and Amanda