My name is Jacksyn Walker. I am fourteen years old, and I was diagnosed with FA in April of 2015. You can have early onset FA (which is what I have), or you can have late- onset which will affect you during adulthood. There are five kids in my family. None of my siblings have FA yet, but they do have a 25% chance of still having late- onset FA. My parents decided not to test any of siblings until they show signs of FA because there is no cure and just knowing that they have one kid with FA is hard enough.
Dealing with FA has been extremely hard, my entire lifestyle has changed. I use a wheelchair outside of our home at school or wherever I go. That has been an adjustment within just the last year. School is really hard because I can’t take notes or do anything as quickly as the other kids in my classes. My school (Westfield Middle School) has been really supportive and they have tried to help out as much as they can. I am very thankful for them for trying to help out. The worst thing about FA is that I can not play sports, specifically soccer. I used to be a very athletic kid. I was probably the most agile player on my soccer team. I still love to watch soccer, whether it’s on tv or watching my siblings play. Maybe one day I can become a coach!
Having FA has definitely takes a toll on me and my family not only physically but emotionally as well. My parents are really supportive and they help me when I need help (even if I don’t want it). When I was diagnosed it was really hard for my family, and it still is.. but we realized that our hope is not to be placed in the things on earth but our hope is in heaven with Jesus. If they never find a cure for me on earth, I know that because I accepted Jesus as my Savior that I’ll be eternally cured in heaven! Because of that, I am thankful that I don’t have to worry about FA forever! Even though there is no cure right now for FA, there are several trials that make us hopeful. We are trusting in God that He will do what is best even if we don’t understand it at that time. We are constantly praying for those who are researching and working on a drug that helps FA patients walk again. Thank you for everyone’s support and please continue to pray for me and my family as we are on this journey through FA!
What I’ve learned since being diagnosed with FA:
Life is hard, but God is good. He is continually surrounding me with people who sincerely love me and see past my disease. My community is vital as I continue to fight this ongoing battle. Support is crucial. My attitude and perception is everything.
Tori is a wife and mother of three boys.
We are the Lawson Family…Our family has been living with FA for seven years now. In May 2010, my son, Wesley Lawson, was diagnosed with Friedreichs Ataxia (FA)
Wes was 16 years old. When he was 12 years old he started developing symptoms such as loss of balance and coordination. He was very athletic. He played Travel Baseball for the Bandits & the Renegades. His skills diminished to the point that he couldn’t play anymore. It took four years and several Dr. appointments/testing to get a diagnosis. Riley Children’s Hospital did genetic testing and Wes was diagnosed with FA and HCM (Hypertrophic Cardiomyopathy). There is no cure or treatment and it’s progressive.
His Neurologist said that he would be in a wheelchair within 10 years. Wes is now 23 and can no longer walk on his own. Everyday tasks that we all take for granted have become difficult for him.
Wes is a Father. His son Lucas is five years old and just started kindergarten. I believe Lucas was a gift from God and the reason for Wesley to continue to hope and pray that sometime in the near future that they find a cure.
FA Indy Board
Our board consists of 5 members. We meet quarterly to guide the business of FA Indy, Inc. Each member has an educated background and proven themselves successful in their professional careers. If at any time you would like to meet any of us, please call 317-528-0078 or email email@example.com