My name is Amy Draves and have been diagnosed with FA by a genetic test for less than a year. I’m 65 years old and considered, late-onset, which tends to be rare.

I got married and three kids in quick succession. Throughout the early year son motherhood all seemed fairly normal with occasional bouts of vertigo and always easy to fatigue. When the kids were in middle school I started having aches and pains and was given a diagnosis of Fibromyalgia. At that time this was a very newly discovered condition and I appeared to fall into its parameters.  Read more…

As time progressed, I still considered myself unaffected by anything major. In 1998 I moved from Michigan to Indiana to accept the dual role of Children’s/Worship Pastor. I became very ill that first summer and had a test which said that I had non-Hodgkins Lymphoma. We had a huge prayer meeting at church and God turned that life threatening diagnosis into sarcoidosis – which is an autoimmune disease which has mainly affected my lungs and pericardial effusion. All pf which have been managed with meds. 

Now I had two diagnosis’s, but wasn’t done yet. When younger, (college age and beyond) had various difficulties with torn ligaments and both of my knees had several scopes. Never thought much about it. I would fall very easily – once even down a full staircase…but chalked it up to being clumsy. [My brother Tom,(11 years younger than I), was diagnosed with MS…the first such disease in my extended family. He was 23 and the disease affected his balance, speech, and vision.] My balance wasn’t as good as previously but I never compared myself to Tom. 

When I became aware that something really wasn’t right was at a kids camp. All of a sudden I couldn’t run. Couldn’t explain why. That same summer I would trip over tree roots just walking. Time passed, and vision issues (vertigo & a retina problem), and losing my balance on my bike (especially starting and stopping). Things were piling up – so was sent to a balance therapist. After a while, she recommended a neurologist. She did lots of tests (which I now know are the SERRA test) and came up with a generic diagnosis of some kind of ataxia. I eventually got a balance vest which seemed to help some. 

Did lots of research and joined several Facebook pages, where I met a friend from Westfield, and together we started the Central Indiana Ataxia Support Group as I found I needed to understand firsthand what this disease did. Most of attendees had SCA of some sort or undetermined kinds of Ataxia. I figured I had SCA too. 

I went though an extremely emotional and trying time which included Tom’s death at age 43, my mom dying of Alzheimers, caring for my Dad and his ultimate death and some other things which threw my body into a tail spin. I went from walking wobbly to a cane, then walking sticks, and now a walker. I was dropping things, choking, and had neuropathy. 

Was told by several friends to go to U of M in Ann Arbor to their Ataxia Clinic. There I had an extensive exam, including genetic testing. The Doctor told me at the end of the exam, (before genetic testing was completed) that he was confident that I had FA. The results were conclusive with repeat numbers of 100 and 1,200. He said that there was no doubt that Tom didn’t have MS, rather FA. Many of my symptoms mirror his. Now I am participating in a very promising Clinical trial which works on the gene Frataxin. I’m so very hopeful that this will have a positive affect on people with FA…no not a cure, but one that makes the quality of life better. 

That has been my journey of discovery of FA. Throughout my lifetime, through its ups and downs, the only way I have been able to get through is a deep abiding faith in Jesus Christ. Without His presence in my life, I would have fallen into despair. I know who holds my life in His hands. I also know that my body may have FA, but it doesn’t control me. He is my hope! My prayer is that you too may find the hope that only He gives. 

 

My name is Jacksyn Walker. 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!

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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!

#cureFA #jacksynstrong

We are the Parson Family. FA has had its affects on everyone in our home; how we live, what we do, where we go, and how to adapt to the progression in our son Tyler, who is an energetic, intelligent, and lovable young man with big hopes and dreams.

Tyler 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.Read more…

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.

  1. For our son to be healed.
  2. That He uses us to further His kingdom.
  3. For us to NEVER lose our faith in our God.

Over the 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!

Tori Schlageter

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 diagnosed with FA. 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 can no longer walk on his own. Everyday tasks that we all take for granted have become difficult for him.

Wes is a Father. He has a son Lucas. 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. Our goal is to help those diagnosed with FA to help them have as normal a life as possible, support FARA in finding a cure, and provide educational information on Friedreich’s Ataxia. Your help, in any way, is greatly appreciated! 

If at any time you would like to meet any of us, please call (317)528-0078 or email faindianapolis@gmail.com