A little bit about me

I am 24 years old and a Texas native. At 13 years old, I was diagnosed with Friedreich’s Ataxia (FA). I found out that I had hit the genetic jackpot. That is when the biggest monster entered my life and I had no way of defeating it or even the capability of shrinking it. The only thing I could do was figure out how to grow bigger than it. And that is what I did and continue to do everyday. Some days are definitely harder than others but I have to remember that I have FA, but it doesn’t have me, God does.

The FA community is something truly special

For five years I couldn’t even think about my diagnosis. I did not feel capable of handling this, but that all changed when I slowly started integrating myself with others who knew what I was going through. Last November, I participated in my 5th rideATAXIA Dallas and had the opportunity to be a speaker. This is in stark contrast to the first one that I attended. I did not participate just spectated and was there for maybe a total of 15 minutes. I just wasn’t ready. I think just about everyone diagnosed with FA can relate to that!

There is a special bond between individuals who walk the same path as you. It is a sense of belonging and acceptance that everyone should have the ability to experience. And when you have a disability, having the ability to do, feel, and experience something is just magical.

I did more than just accept my diagnosis, I embraced it

It has taken me a while to accept and embrace my life now. It didn’t happen overnight. At 18, I dove head first into everything supporting the Friedreich’s Ataxia Research Alliance (FARA)! I became an ambassador and started sharing my story. I tried to be as involved as possible with the FA community. At first, it felt scary, and now, after having met the most caring and loving people, I have found the courage to be a leader of the FARA teen hangouts team and co-leader of the FARA social media team. Getting together with people who know exactly what you are going through is very comforting. Supporting the younger teens who are where I have been fills my cup. FA may hinder the way that I do things but I can still do them. I also participate in clinical drug trials and studies to do my part to try to help find a cure for Friedreich’s Ataxia. Participating in fundraising events like rideATAXIA and Cure FA Soirée make that possible.

I hope that sharing my journey inspires others

I have learned that using social media is an outlet for me and possibly helping someone else by sharing my journey is a blessing in my eyes. Putting myself out there was extremely hard but I am so glad I did. I realize the importance of sharing not only the good experiences but also the not so good ones. Allow whatever you are going through to have the capability of making you an inspiration to others.

I am an ambassador for Make-A-Wish, Muscular Distrophy Association (MDA), and FARA ambassador. I am also a member of the FARA Ambassador Program (AP) leadership team, but ultimately I am an ambassador for Christ. Madelyn’s Tribe started as a team name for a fundraising event and now it’s my brand. I have found my purpose through my struggle and am sharing my life on social media and spreading awareness for FA. Stay up to date with me @madelynfrederick on Instagram, Facebook, and YouTube!

I am dancing to the song that God is playing for my life

I received a Make-a-Wish trip, a Mediterranean cruise to Greece which was on my bucket list. I have done so many other amazing things and had wonderful opportunities placed in my path, all because of FA. With each trial and hardship that I face and each time I am given a chance to do something, I see it as one step closer to the cure; doing my part, I know that one day, with the help of the FA community, and everyone involved, we will cure FA.

In life everyone has goals and dreams and when FA came into my life they disappeared. I lost all sight of everything. It was all blurry. I had dreams of becoming a mom, a wife, a traveler, and so much more. Sometimes with a life-shortening illness, a sense of urgency comes upon us, like a time bomb waiting to detonate. This past year was not easy for me, but when is life ever easy? We make plans for our life and God just laughs. I had some cardiac issues which are now resolved. Instead of rushing through the tick, tick, tick of the bomb, what if we made it a beat to our dance through this life? Instead of settling and lowering the bar because of FA, let’s dance to the rhythm of God’s song for our life because, who knows, it may be more than what we could have ever imagined. God has an interesting way of rearranging our steps. Taking people out of our lives very quickly and for the very best reasons and then just as swiftly adding new ones in to sweep us off our feet or our wheels.

My faith in one verse and a feather tattoo

Psalm 91:4 ~“He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.” This verse resonates so deeply that I now have a tattoo of a feather on my wrist.

In conclusion

Never settle,
Be good,
Be kind,
Be positive, and
Remember, “We may have FA but it will never have us.”