OTHERS

Living with Friedreich's Ataxia

Rare Disease & Syndrome

Kate Walker

Who am I?

My name is Kate Walker and I am 14 years old. However, I am not your average 14 year old. When I was a kid, I was always a bit clumsy. It took me forever to learn how to ride a bike without training wheels, I never could roller skate, and my running was never the most graceful thing in the world. In the seventh grade, I had the opportunity to go on a class trip to Washington D.C. While I was there, I noticed that I could not keep up with my friends. My balance had always been off, but we thought that I just hadn't grown out of the awkward stage yet. When I got back from the trip, my parents took me to the doctor. We were just hoping to get physical therapy to help solve all of this. However, this doctor sent us to a neurologist. He wanted to make sure that nothing else was going on. The neurologist ordered an MRI and then sent us to a pediatric neurologist. The pediatric neurologist ordered blood work, which gave me the final diagnosis of Friedreich's Ataxia. I was devastated. I felt like I was alone and that there was no one else in the world that could ever understand what I was going through.

What is Friedreich's Ataxia?

Friedreich's Ataxia is a rare, degenerative, neuromuscular condition. It is caused by one recessive gene. FA only occurs in 15,000 people in the whole world. Some of the symptoms are loss of balance and coordination, severe scoliosis, loss of hearing and sight, diabetes, heart condition, and slurred speech. FA gets worse over time, so patients eventually lose the ability to walk. You can find more information about FA on my website, makeithappencurefa.com.

What did I do?

For a few months after my diagnosis, I shut down. Only my family and a few of my close friends knew about what was happening. In October of 2016, my parents attended a research symposium and bike race to support FA research. They returned with the news that there was an entire community out there that was ready to let me in. It took me a while to get comfortable, but I still did not want anyone to know about what I was going. My parents bought me a recumbent tricycle. I never could ride a bike much as a kid, so I loved having the opportunity to finally enjoy the ride. Currently, I can still walk, but I use a walker on occasion. On January 22, 2017, I launched an Instagram and Facebook page to raise awareness for FA. I participated in a bike ride in April and raised $28,000 for FA research. During those few months, I worked so hard to spread the word about FA to anyone and everyone. Then, in August, I launched my own website. I started a blog page and shared my story as much as I could.

What I've Learned

1. Disability does not define me. 

2. People are going to react how I react.

3. The only thing that can change my attitude is myself. 

4. I can do anything. 

5. Nothing worth doing comes easy. 

6. Life is about learning to turn a negative situation into a positive one. 

#curefa

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