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 a year ago so I can receive enzyme replacement therapy every two weeks. No one knows what other symptoms I will have- right now I have Ataxia and use a walker or wheelchair to get around. This type of genetic disorder affects the bodies 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.
When Were You Diagnosed? Which Type (If Known)?
May 2022
How Has Ataxia Impacted Your Life?
I can no longer walk unassisted.
What is One Thing You’d Like the People to Know About Ataxia?
Having Ataxia has changed the way I thought my life would look like. Things are getting harder to do everyday.
Share Your Advice – How Can Others Support Someone with Ataxia?
Please don’t stare! And don’t be afraid to come up to us and ask questions.
How Has NAF Helped You or Your Family?
I was first misdiagnosed with Spinocerebellar Ataxia and that’s when I joined NAF. They guided me to a huge amount of information on Ataxia and I also was able to find a support group online.
What is Your Ataxia Story?
As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.
Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community.
Recent Member Stories
Neyveth Duarte
My name is Neyveth Duarte and my dad was officially diagnosed with Ataxia earlier this year. My dad is my hero and he is going Read More…
Adam Nelson
I grew up in a small & rural town of about 3,500 people in central Minnesota. I was raised in a blue-collar middle class home, Read More…
Ataxia Connection Travel Grants Bring Over 50 Attendees to the 2025 Annual Ataxia Conference
Submitted by Theresa Nelson, Executive Director at Ataxia Connection It is an exciting opportunity for our organization, Ataxia Connection, to travel and attend the Annual Read More…
Finding Connection at the 2025 Annual Ataxia Conference
Submitted by Mark Holdenried Attending the 2025 Annual Ataxia Conference (AAC) in Las Vegas was a meaningful and energizing experience. From the travel experience to Read More…
Lim Siah Gim
My challenge and journey with Ataxia I was born youngest in a family of 11. From teen I witnessed my father (who was about 50 Read More…
Shawn Davis
Why I Wrote a Children’s Book to Explain Ataxia Well, it turns out your brain’s cerebellum is super important… A couple of years ago I Read More…
