Project Description

Suzanne’s Story

My beautiful daughter, Suzanne is a 33 year old who was diagnosed with Dravet syndrome 4 years ago. She was tested and it was confirmed that she had an SCN1A mutation. Suzanne started having seizures at 10 months old. Her first one was a seizure that lasted over an hour. We almost lost her that day. Over the years we went through many hospital stays for weeks at our local hospitals as well as Yale New Haven, Cleveland Clinic, and many NYC hospitals. We went everywhere to try and get help as she had status seizures.

There were so many close calls. We tried so many drugs with terrible side effects. Her liver shut down completely 3 times and one time it took a week to start to work again and 6 months to get back to normal. She developed more learning disabilities due to medicines side effects and the loss of days at school. Suzanne was a Make-a-Wish kid in 1991. In 1994 she was the Epilepsy Foundation Poster Child. In 1992 Suzanne started riding horses in a special therapy program. Suzanne enjoys life and her seizures are apart of it. She really enjoyed the Games for the Physically Challenged and won many gold medals in swimming, horseback riding and track. Suzanne graduated from High School in 2002 with an IEP diploma. She has worked for the last 16 years for the Town in the Senior Department as a clerk. She loves her job and they love her. Suzanne started making jewelry to help her fine motor skills as her hands shake a lot. She loves all kinds of crafts. She loves music, movies and animals. Family is very important to her. She loves when the family gets together.

Suzanne is very social she has 4 close girlfriends she knows from the second grade and they get together all the time. She belongs to Huntington without Walls a adult social group for adults with disabilities that is supervised, that gets together 2 times a month. She belongs to Hopefitness a gym for adults with disabilities which she loves the gym as well as helping teach the yoga classes. Suzanne is very proud of who she is and tells everyone she has Dravet syndrome.