My name is Evelynn Garcia and I am one of the newest board members of HDSA. I have a niece and nephew with the juvenile form of HD, and I am very passionate to work towards a cure.
My niece Jasmine just recently turned 14 years old and my nephew Christopher is 12. Jasmine was diagnosed with JHD at the age of 12 and Christopher at 11. They inherited HD from their father’s side of the family. Their grandmother was diagnosed at the young age of 35 and passed away last year at the age of 50. Their father, Christopher Sr. is 38 years old and has been living with HD for 5 years now. They also have an aunt (Chris Sr.’s sister) with HD who was diagnosed at 29 years of age, she is now 33.
I never knew anything about Huntington’s disease. What it was, how it affected an individual or what its lasting effects would be. I remember like it was yesterday when my niece had a seizure and had to be rushed to the hospital, where after several tests they determined something was wrong, not sure what but something was wrong. My sister took her to a neurologist who conducted an MRI. My mother and I went the following week with my niece to her follow-up appointment to get the results. The doctor showed us the brain scan, which was surreal. I could not believe what my eyes were seeing. He then broke it down to us that my niece had JHD, and it was not good.
Since then I have decided I need to do something. I began doing research to learn about JHD/HD, got in contact with the Tucson Support group, and I now am an official Board Member. My purpose and goal is to be a part of a bigger picture like HDSA to help bring about awareness of JHD/HD, get people involved and hopefully find a cure!