I am the mother of a child with SCA (type 14). My daughter who is now 12 had her first symptom when she was 5. She had a vision through her school and had failed it. What was so unusual about that was she had her annual exam with her doctor just a month before and had 20/25 vision. As it turned out she had developed a nystagmus. After that the rush was on to find the purpose of the nystagmus. MRI’s, blood test etc. We could not find the answer to this question. We knew it wasn’t a tumor or cancer, but what was causing it nobody knew. Sometime later she failed a hearing test. She had always been a clumsy kid, but things were getting worse in that area too. It was a mystery. It’s one thing when it’s you and you’re afraid of the unknown, but when it’s your child it completely hard not to go to the scary place. Eventually we ended up at Children Hospital Los Angeles and had genetic tests done. Finally after 4 years we had our answers. Spinocerebellar Ataxia (type 14). She’s 12 now and spends most of her time in a wheelchair and has only 40% of her hearing left. A few years ago she started having trouble swallowing, but she’s a superhero and has a good life. Very different from what I had originally planned but it’s a good it’s a happy life filled with PT/OT, doctors, nutritionist and others.
When Were You Diagnosed? Which Type (If Known)?
2 years ago, SCA (type 14)
How Has Ataxia Impacted Your Life?
In every way.
What is One Thing You’d Like the People to Know About Ataxia?
That it is real and we need a better understanding of it.
Share Your Advice – How Can Others Support Someone with Ataxia?
Have patience with them, SCA does not come with a manual.
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.
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Recent Member Stories
Tyler
My grandmother died prematurely from ataxia when I was just a baby, 26 years ago. Now today, my aunt has severe SCA and my mother Read More…
Tracy B
My paternal grandfather had a wide gait and difficulty walking and talking. We were told it was like “hardening of the arteries in the brain.” Read More…
Pinalben “Pinky” Patel
A Wheelchair is Not The Endgame By Pinalben “Pinky” Patel I’m sorry, but I don’t consider wheelchair users disabled. I am a very happy person Read More…
Shaun Wesley Best
My Ataxia journey began in 1978, following a three-month coma I experienced the year before, at age 12. Since then, I’ve faced significant balance challenges Read More…
J.C. Myers
Ataxia comes as a dominant gene through my great grandfather, Ernest, my grandmother, Ernestine, and my mother, Leslie. My mother’s brother died young and we Read More…
Susan Harding
I’ve been living with a genetically acquired Ataxia since birth but was only clinically diagnosed in 1992. My mother was diagnosed in 1976. Her brother Read More…
