Hope for Hill

My name is Tammie Hill. I’m 53 years old and I have a genetic disorder called Batten Disease-CLN2. Doctors don’t know why I didn’t start showing symptoms until I was in my forties-this usually only happens to very young children. There is no cure but there is a treatment for the type of Batten Disease I have. I had a port placed in my head August of 2023 so I can receive enzyme replacement therapy every two weeks in hopes of slowing the progression of the disease. No one knows what other symptoms I might have in the future- that is a frightening thought. Right now I have Ataxia and use a walker or wheelchair to get around. This type of genetic disorder affects the body’s ability to get rid of waste so they build up in cells all over the body. The buildup causes seizures, vision loss, problems with thinking and movement, and eventually death. There is no cure. I've found my people! I try to live with urgency because so much of this disease going forward is unknown. At my age doctors just can't be sure of what I can expect. Because of the wonderful people at the BDSRA, I feel like I have a future to look forward to!

When I finally received a diagnosis June 22, 2020, I was misdiagnosed! I was told I had Spinocerebellar Ataxia. So for 2 years I joined the NAF (National Ataxia Foundation) and an on-line support group. I was glad to be part of a group of people who could understand what I was going through. That feeling of belonging changed after I had genetic testing done in December 2021. On May 22, 2022, I was told I had a rare, and inherited genetic disorder that affects the nervous system and brain- Batten Disease- CLN2. They didn't know why I didn't have any symptoms when I was young and couldn't tell me what my future might hold. I was told there were no support groups for people my age because this disorder generally develops in early childhood. I felt alone and scared. I didn't have anyone to share my feelings with and no one really could understand my need to live with urgency. Then one day my neurologist told me about the BDSRA family! I call them my family because that's what it is- a FAMILY! I attended the annual family conference in July 2024. I was a little nervous because I didn't want parents to feel like I was intruding in their space. Boy was I wrong! Everyone there welcomed me with open arms and I finally found "my people"! I finally felt like I belonged somewhere and found people who could understand what challenges that I face every day. The BDSRA helps so many families out there who think they are alone- just as I thought. But they can't do it alone. Donations are needed in order for the BDSRA to continue to help families year round. Please consider donating to my Fam Fund page- be assured that any money donated on my page will go straight to the Greatest Need Mission. The BDSRA has supported me and families all around the country- please consider supporting them!