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!
We are the Parson Family and we have been living with Friedreich”s Ataxia (FA) for ten years now. say we because FA affects everyone in the home. How we live, what we do, where we go, and how to adapt to the progression in our son Tyler is a 23-year-old, energetic, intelligent, and lovable young man with big hopes and dreams.
Ten years ago, he was a tall, skinny, lanky, and very clumsy teenager. He would just fall for no reason, couldn’t sit still and even though he was never any good, he inspired to be a professional basketball or soccer player. We as parents were concerned with how clumsy he was. We seen an orthopedic specialist who told us that his joints were loose and all he needed was to walk on carpet without any shoes or socks on. We had a pediatrician tell us that he would grow out of it and there is nothing to worry about. It wasn’t until we changed pediatricians did we really know the magnitude of what we were going to learn to live with.
It was one of our first visits with the new doctor, just a physical, when he asked if we had any concerns. My wife stated she was really concern about how clumsy he was. The doctor looked at her like she was strange, but had Tyler walk out in the hall His demeanor changed and within a week he had us in to see a neurologist at Riley Children’s Hospital. There we learned the term Friedreich’s Ataxia (FA). We learned that there was no cure no treatment, no hope for our son. We were told that most kids his age don’t live past the age of 25, Within a few short weeks we also learned that he has Myopathy the thickening of the left ventricle. We learned that his heart would be what killed our son, a heart condition called Hypertrophic Myocardial.
As we left those initial doctor visits, we prayed for three things.
- For our son to be healed.
- That He uses us to further His kingdom.
- For us to NEVER lose our faith in our God.
Over the next ten years God has used Tyler in a mighty way with the ups and downs that come with FA. In 2007 Tyler became the State Goodwill Ambassador for the Muscular Dystrophy Association and later that year was featured on the Jerry Lewis Labor Day Telethon in Las Vegas. He has traveled the state of Indiana talking to thousands of people telling his story, and urging people to help find a cure. The older he got his focus was not to find a cure for himself, but those to come after him. He would say, “…if I die that’s ok, I know where I’m going. I will be with my savior, no more pain, no more suffering, and I will be able to walk again.”
I want to find a cure for those who never has had the opportunity to walk. The young kids who has their whole life to live Through our ten-year journey we have watched FA slowly take parts of our son away. We have gone from walking, to a scooter when he needs it, to being in a wheelchair 100% of the time. we have had many hospital stays, a major surgery, and a number of procedures. Each time a little piece of our son is left at the hospital and he does not come home. Even with the progression of FA, he has big dreams he wants to fulfill He has entered college and is majoring in medical research; he wants to find someone special, get married and have a family and is determined to make all these dreams come true. We have shed many tears over the last ten years but also learned to laugh at FA. We know that without a cure FA will beat us, but Tyler is determined that it will not defeat us!
We also have learned there is whole another family we have in the FA community. From FARA, to the fantastic work that Dr. Lynch and his team at the Children’s Hospital of Philadelphia are doing to find a cure, FA Woodstock that is put on by Paula ant Tom Hook at their ranch in LaPorte, In., and now FA Indy. We are excited to work with this amazing group of people to spread the word about FA. With all that we still don’t have the most important thing that we need. A CURE! A cure before time runs out on Tyler and those who live with FA. A cure so not another parent, spouse, or loved one needs to learn the term Friedreich’s Ataxia )FA).
We have not lost our faith or hope in a loving just God who can heal our son, but we have come to terms with the fact it might not be his will. We still need a cure so we ask to please help FA Indy in finding that cure. It has always been our family motto, “We don’t need a million dollars, we just need that one dollar that will find a cure. God bless!
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 volunteer members, all committed to finding a cure for Friedreich’s Ataxia. 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