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FARAFARA Cure FA

Holly LeBlanc

Dear 18 year old Holly,

You turned the big 4-0 this year! Crazy, huh? You think that seems like a really old age. It is hard for you to imagine what your life may look like when you turn that old. I know you have some ideas, goals or even dreams. You feel like you can conquer the world. You believe you'll live forever and your struggles/challenges aren't a reality. Last year a friend of yours died of a brain tumor. Walking through this with her brought you to a faith in a God. This relationship provided courage that you didn't know existed. Before you graduated from high school, you went to your primary physician who sent you to a few specialists to rule out a brain tumor and MS. Your “clumsiness” wouldn't stop you from leading pep rallies as captain of the cheer leading squad, running for class president (GO WITH THE FRO!) or playing the lead in the school play. So when the specialist ruled out a tumor and MS but wanted to send you to the top neurologist at the University of Michigan, you didn't think it was a big deal. The doctor at U of M diagnosed you with a rare thing called ataxia. Roussey-Levy Ataxia. You never heard of it. Only a handful of people in the nation had it. It didn't phase you. You were only 18 years old, just graduated from high school and the world was full of possibilities. Your life changed and you applied to a college that wanted you to spend part of your freshman year studying overseas. You had never heard of the country or knew where it was on the map but that didn't stop you from saying “yes!”. It was your faith that helped you believe it would be okay. Even when you began to fall or trip in random places. You laughed it off but wanted to be certain it wasn't a brain tumor just like your friend's.

You had dreams of marrying a Christian man and living in Tennessee with two kids. Your goal of obtaining a teaching degree in special education was within reach. You had life planned and envisioned painting that white picket fence while your dog frolicked in the front yard. It made sense that you wanted to keep this mysterious diagnosis of Rousey-Levy Ataxia a secret. These plans were not to be tampered or ruined. When yo,u left for Singapore, only your family knew of this minor “kink” in your life. Time passed and you kept it a secret even after spending four months in the hospital. The time overseas brought on a major unrelated illness and two difficult surgeries. You were down to 72 lbs and dependent on others to get around. I know it wasn't part of the plan to transfer to a local college but your three older sisters and parents were supportive of the idea and liked having you close. This secret was getting more and more difficult to hide as you were gaining the lost weight back and recovering from the surgeries. Once in awhile, people would ask if you sprained your ankle. You knew it was something more. When you went out with your friends in college, everyone thought you were drunk. Your dorm room was on the second floor and it was getting harder and harder to get there. You hated winter with a passion as it was next to impossible to walk on the ice. Despite the secret, you graduated without telling anyone outside your family but you knew it was getting worse. You were growing depressed and your dream was crumbling before your eyes. You changed your major because this secret was getting big and causing you to fear the future. You were scared.

A friend, who was a youth pastor, encouraged you to work with him at the church. Since you didn't have a job, you applied thinking you would work there until you found a “real” job. You're still working there, Holly. Your plan may not be God's plan but trust Him, He knows what He is doing. A few years into the job, you were having a hard time walking in open spaces. This Rousey-Levy thing was becoming more of a challenge than it was five years ago. You searched the internet for other people with this diagnosis. You found a guy in Germany who had two kids and mentioned once in awhile he had problems with his thumbs. Uh oh. You knew you couldn't possibly have the same thing. You couldn't walk from point A to point B with out hanging on to people or walls. It was your loneliness and fear that prompted you to email the neurologist at U of M. You scheduled an appointment a month later.

He confirmed the misdiagnosis of Roussey-Levy and stamped your file and your forehead with the name Friedreich's Ataxia (FA). At the time, he was the only doctor who had studied this rare disorder. He had a small paragraph written about it in a text book. The only words you heard in his office that day, “there is no treatment or cure. You need to go live your life.”

Your dreams were disappearing and this secret was growing bigger than you. After the new diagnosis, you sat in your youth pastor's office and wept. You felt so alone and so very scared at what the future would bring. As you sat in his office that day he told you something you'd never forget. “Holly, you can be bitter or better.”

It's been 20 years on this FA journey. There has been A LOT of “bitter” but a whole lot more of “better”. It is true, the choice hasn't always been easy. The path to get here has not been smooth. But hanging on to the hope that there WILL be a cure has kept you going. Your dream of marrying and moving to Tennessee with twins and a dog have not come true. You haven't painted a picket fence. I am glad that you mourn over that but make the choice not to be bitter. It appears that you focus on the better that this disability brings to your life. Your service dogs have changed the way you live. You have grown aware of the multitude of hurt and pain people carry. Although yours is visible, you are able to relate in an authentic way. The better of FA was when you walked across the stage, leaning on your service dog, earning your masters in counseling. You're in a wheelchair now but still live independently in a home that you have modified to make accessible. You've been blessed with an accessible van to help you get around. You directed a play and maybe impacted some students on the way. You work full time at a church that continually reminds you that God has your back. The better is there, you just have to look. I hope you never forget what FA will teach you.

Turning 40 is not as awful as it seems. (kind of like having FA) It's what you make of it. (kind of like having FA) The secret isn't a secret anymore. Maybe, just maybe, my next letter will be written after a cure for FA!

Not long now, 40 yr. old Holly

 

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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