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FARAFARA Cure FA

Drake and Trisha

Name: Drake (aka bub)

Age: 8 years old

Where do you call home? Ohio

Do you have any brothers or sisters? I have a sister named Zoe.

What grade are you in? I am in the second grade.

What do you like to do in your free time? Play outside, play DS and play Xbox.

How long have you been living (or known you are living) w/fa? (When and how were you diagnosed?) I was six when I found out. They gave me a blood test that hurt.

Do you have any known family history of similar symptoms to FA? My Grandpa and Aunt (Mom's Dad and Sister) have Huntington's Disease.

Describe your transition from walking to walker:. Using my walker didn't make me feel great but it helps me walk and not fall as much.

What do you like to do to stay active and what type of exercises do you do to stay strong? Playing outside. What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? I get to go to camps other kids don't get to.

How did it make you feel when you were able to meet other kids with FA? It makes me feel happy.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Get rid of my walker and all my meds!

"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? FA doesn't stop me from doing what I want to do.

 

Strong support systems are so important! The FA Community is filled with some of the most incredible supporters. :) Trisha is Drake's mom. Read Trisha's interview below. With such a supportive and encouraging family foundation, no wonder Drake is so strong and resilient!

 

What quality or trait has been brought out the most in Drake despite living with FA? The best thing about Drake is that Drake doesn't let FA hold him back from trying new things and doing them. If he can't do something, he will find a way to do it no matter what.

What did you find was the best way to discuss the diagnosis with your son? Drake is such a lover, that when we received his hypertrophic cardiomyopathy diagnosis at the age of four, there was no easy way to explain this to him. We decided the best way to tell him tell him was that he had a bigger heart than other people and that this was okay, it just meant he had more love to give and to receive. Drake thought this was so awesome! When Drake was six we found out he also had FA, again there's no easy way to tell him so we just told him that this was the reason he falls a lot and why his legs hurt and why he is always tired. We also explain to Drake that his muscles are weak. I'm not sure he fully understands everything but when he has questions about FA, we try our best to explain them to him.

What advice would you give to other parents whose child was just diagnosed? The advice I would give another parent is there is hope! When we were diagnosed, we were told that there wasn't much research out there and not a lot known. Which was not true. The doctor we were seeing just didn't seem to care to do research on current FA trials or tell us there were other options out there. Therefore, if you don't like your doctor, there are others out there willing to help. There are people going through the same thing as us, we're not alone. I also pray a lot that they find a cure for these kids. Don't ever think you're alone because you are not. Until a few months ago I thought I was alone but I'm not. There are so many great people out there willing to answer questions or just talk if you need it.

How has Drake inspired your life? Drake has inspired me so much. Eight year old boys love to run, play outside, play sports and do the every day "boy thing." Drake has been using a walker for over a year now but he doesn't let it get him down. He will still try and run and keep up with the other children. He doesn't let the falling and tripping get to him. He goes with it and gets up and carries on. Drake doesn't let FA get him down or stop him from being an eight year old boy. I just couldn't see myself going through what he is and being okay with it the way he is. He tells me I'm his hero, but, really he's mine.

How have you been encouraged for Drake's future and living life with FA? I have been encouraged for Drake's future because I have talked to so many people that have children in their thirties that are living alone and have boyfriend/girlfriends and have full time jobs or going to school and have kids. When we were diagnosed I didn't have any hope, I thought he would be in a wheelchair and be at home with me for the rest of his life. But after meeting so many people at the symposium I have found new hope that he will live a full life and have whatever his heart desires.

 

A very BIG thank you to all our parents, brothers, sisters, grandparents,
aunts, uncles, cousins, friends and caregivers!!

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

 


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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