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FARAFARA Cure FA

Hannah and Austin Stacks

Hannah and AustinName: Hannah and Austin Stacks

Age: 11 (Hannah) and 7 (Austin)

Where do you call home? Cumming, Georgia

Who do you live with? With our parents and each other.

Education: 6th grade at Liberty Middle School (Hannah) and 1st grade at Matt Elementary School (Austin)

How long have you been living (or known you are living) with Friedreich's Ataxia? Hannah: Half my life, shortly before my 5th birthday. The director of the preschool that I attended approached my mom and said that something wasn't right with my legs although she was unable to detail exactly what she was concerned about. For the next year, we chased a diagnosis with new issues continuing to pop up, like worsening gait, more falls, and nystagmus. We found a new pediatrician who immediately recognized what was wrong with me because her kids have FA too! Within a couple of days, I had an appointment with a new neurologist. He agreed that it appeared that I had FA and did the blood test to confirm it. A few weeks after that, mom and dad took me to see Dr. Lynch at CHOP. Austin I was diagnosed about a month before my 5th birthday. I was only 2 when my sister was diagnosed and my parents decided to wait to have me tested. My parents were becoming concerned while watching my feet when I tried to play soccer. One day, my mom saw me try to skip and it looked just like how my sister used to try to skip. She knew right then that I probably had FA, too.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? Just each other. We had never even heard of FA.

Describe your transition from walking to walker/wheelchair. Hannah: I have been using a wheelchair for almost 2 years. At first, it was for long distances and for school. I now use an electric scooter at school and love the independence it gives me. Austin: I am still very active and do not need a wheelchair.

What do you like to do to stay active and what type of exercises do you do to stay strong? Hannah: I love to ride horses and swim. Austin: Baseball, basketball, swimming, running and playing with my friends; I love playing on a local baseball team. We even won first place in the county!

Do you use any tech aides? if so, what works or hasn't worked for you? Hannah: I use an ipad at school. Some helpful apps are Jotnot Pro, iAnnotate, Pages and Join Me.

What's your most comfortable pair of shoes to wear? Hannah:Stride Rite tennis shoes in a wide so that my orthotics can fit in them.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? Hannah: I have met some really caring and supportive people. I have also really enjoyed getting to know other kids with FA at FARA fundraisers.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Hannah: Stay strong! You can get through this.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Hannah: RUN! and play outside with my friends Austin: If a pill would be found to cure FA, I would want Hannah to have it first so that she wouldn't be out of balance anymore.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? Hannah: I know I have FA, but it doesn't have me because I keep battling it.


We are stronger together! Find a new "Meet the Community" interview every Monday. Lealan

 


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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