An open letter to parents whose children have FA

As our parents know, those of us with Friedreich’s ataxia (FA) persevere through all of the challenges life throws our way — and there are many.

I’m proud to belong to a group of such scrappy and fierce people, even though none of us would’ve chosen to live this way if it were up to us. Yet our ability to adapt and survive inspires me every day.

However, we’re not the only ones in this community who are so resilient. So are our parents.

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June 7, 2024 Columns by Elizabeth Hamilton

Facing my fear of inadequacy while parenting a child with FA

I’ve previously written about how my parents have been pivotal in making me who I am today. In this column, I hope to broaden that sentiment to all parents of people with FA. While our gratitude for our parents is often unsung, I hope the following open letter will convey how we feel.

Dear parent in the FA community:

I see you, even if you never wanted to be in the spotlight.

The burden you carry is heavy. I imagine that, at times, guilt weighs heavily on your heart. Regardless of whether or not you knew about the mutated FXN gene that causes FA, you certainly wouldn’t have chosen to pass the disease on to your children. Just as you wouldn’t blame us for our condition, you’re not at fault for being our parent, either.

As someone with FA, I know that having to watch your child be swallowed up by disability is cruel and heartbreaking. I know you would take our place if you could. Your child knows that, too.

Nevertheless, you’re probably not thanked enough for what you do. Frankly, my own parents might be wondering why I’m writing so graciously to other parents when I rarely thank my own.

While we don’t always express our gratitude, please know that you are appreciated — for all of the worries you have for our future, the concerns you express when we stumble, the times you question your ability as a parent, and the tears you shed when no one is looking. All of this matters to us.

Thank you for staying by our side as we face the progression of our disability. Your constancy gives us strength.

Another thing I’d like to mention is FA research. When I was young, I wanted nothing to do with it. But my parents encouraged me to participate in clinical trials that sought new treatments for FA, and as a result, I developed a lifelong passion for advocacy work. Don’t underestimate the impact your guidance has on us. Along with your love, care, and dedication, it all makes a difference.

Please remember to take care of yourselves, too. Your well-being is essential for this journey. We need you.

FA is a terrifying burden, and you might question whether you are a good parent. I think that just by asking that question, you’ve got your answer.

Thanks for reading, and thank you, Mom and Dad.

Love,

Matt, an FA patient

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.