Max spends about 90% of his time in a wheelchair not because he can’t walk but because he can take up to 128 seizures in the one day and they simply wear him out. It’s a catch 22 situation as Max needs to be able to stay active so his muscles don’t waste but activity can bring on the seizures as it makes him tired.We are raising funds to send him to a world renowned specialist based at Miami Children’s Hospital in pediatric 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.