Thinking through mobility aids and shifting mindsets with FA

When our daughter Amelia, 13, was diagnosed with Friedreich’s ataxia (FA) five years ago, I started doing the math. Like other parents, we’d been told that most people diagnosed with FA will need a wheelchair within 10 years after symptoms appear. This, of course, depends on the speed of disease progression. For us, that meant Amelia would likely need a wheelchair by the age of 14.

I thought a lot about this during those early days after her diagnosis. I obsessed over it. What would Amelia’s wheelchair use look like in our home and in our community? How long would we have before accessibility issues became a big part of our lives?

The other piece of information I repeatedly heard was that we should try to keep Amelia moving as much as we could. Pushing her to continue walking would help her maintain her mobility as much as possible, and it meant more than simply helping her move from one room to the next. It would also help her to remain more independent. But this issue has caused me great tension as FA has continued to progress in my child’s body, upending our lives.

Recommended Reading

December 1, 2023 Columns by Elizabeth Hamilton

How incorporating new tools and interventions has helped our family

Solving the puzzle

Figuring out how to address Amelia’s mobility challenges has been a big puzzle for us. Which devices would best serve her needs? In my experience, information and support to help guide this type of decision-making is lacking. It truly comes down to a person’s preference and abilities. Amelia often doesn’t like the clothes I think she looks great in, which is similar to our situation with her mobility devices.

So I decided to leave that issue to the professionals, including her physical and occupational therapists, who offered her several different walkers and rollators to try out. We settled on a Nimbo posterior walker, which allowed Amelia to stay true to her personality. Several years ago, at a Friedreich’s Ataxia Research Alliance symposium, I was talking to a researcher who asked which child was mine.

“She’s over there, running with her walker, and kicking her feet up high so that she can glide across the room,” I replied. It was a pretty funny sight, that bright blue walker streaking across the room with my daughter’s feet in the air.

When it was time to consider getting Amelia a wheelchair, her therapists had that hard conversation with me. Any parent of a child with FA knows firsthand how complicated this decision is. For me, it felt like defeat, because we’d done so much to keep Amelia active and on her feet.

One of my core values used to be work hard and advocate for what I believe in. The former has changed over time as life unfolded and new lessons humbled me. I know I can’t outsmart or outwork FA, although I’ve tried. Even if a cure is found tomorrow, I can’t replace everything my daughter lost during her childhood. This has made me adapt my core value to love hard and advocate for what I believe in.

Loving hard means seeing someone for who they are and within their own reality. Our reality is that FA has stripped Amelia of her independence. A wheelchair can provide a degree of freedom, comfort, and ease as Amelia navigates the world around her. It can make her experiences in the community more accessible and decrease her fatigue, which is a major issue with FA.

Do I still get Amelia on her feet to walk when possible? You bet. But I also provide the support she needs and grab the mobility device that’s best for her in a particular situation. Then I offer her a reassuring smile and a heart full of love.

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.