Jocelyn is 20 now and has turned into a beautiful young lady. It’s truly amazing how far she has come despite suffering from AHC her entire life. The day after Jocelyn was born she had her first AHC attack. Of course no one could have known it was AHC, so it was misdiagnosed as epilepsy – for three years. Drug after drug and nothing would stop the ‘seizures’. At age three she was officially diagnosed with AHC by Dr. Kenneth Silver. This began a new course of treatment, however, the attacks have never decreased in frequency or severity. Over the years she has had the “typical” AHC triggers- water, sun/lighting, heat/cold/wind, loud noises, etc. Any type of excitement – good or bad – can bring on attacks. So for Jocelyn, AHC can make a good day bad, and a bad day horrible. Holidays are especially bad. All this has created a persistent anxiety, which itself can bring on attacks. It’s a vicious cycle she lives with, and it is frustrating, alienating, and at times, devastating. Through it all, she still puts on a smile and just keeps fighting.
But there is hope! The AHC Foundation has funded research for many years. With advancement in technology, even a small orphan disease like AHC has been able to make progress in finding a treatment or even a cure! At our most recent conference, several researchers presented their most recent findings (including Dr. Silver!). The results are simply amazing. There is a lot of energy and optimism behind this research and we are going all-in to raise enough money to move this research forward.
We are asking you to join Jocelyn in this effort. Any donation is welcome and appreciated. Please be a part of bringing hope to Jocelyn and the hundreds of other kids (and adults) who live with AHC every day.