Getting out of debt was key to managing Friedreich’s ataxia

Everywhere I look, I see advertisements on billboards, computer monitors, and even at the pump telling me what I should buy and how I’m missing out on having certain things. We are bombarded by it.

We don’t hear as much about personal finance, however. Discussing that often leaves me feeling uncomfortable. But as a parent of a child with Friedreich’s ataxia (FA), managing our finances effectively has been essential for meeting the needs of my 13-year-old daughter, Amelia, as this disease comes with significant expenses.

During the early years of our marriage, my husband and I found ourselves in a financial mess. I had substantial college debt, we had financed our wedding with a credit card, taken out loans for cars we “had to have” for work, and purchased a house with less than 20% down. When I faced a medical crisis, it meant missed work and lost income. We were broke, and it was terrifying. Sitting on my couch, scared on a Saturday night, I laid out all our paperwork on the coffee table and decided I wanted something different for our lives.

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Balancing the books

I began to learn everything I could about personal finance because I knew almost nothing. It was like learning a new language. I read every book I could find, listened to podcasts (which were relatively new at the time), and watched shows or documentaries whenever I could. Each resource taught me something valuable, from understanding the mindset that led to our debt to managing what money we had.

The next few years weren’t easy. We stopped buying gifts, and when I’d make plans with friends, I’d often eat before going out. Sometimes, I’d just cancel plans altogether. I got some pushback, which was difficult. Some people thought I was being extreme, but others understood our situation. I took on every holiday shift, worked extra hours, sold items we no longer needed, and lived on beans and rice. We learned how to have fun without spending money. My husband and I addressed the problem as a team, though I often felt guilty because much of the debt was mine.

It took us 28 months to pay off debt while cash flowing my master’s degree, but we did it. I remember crying tears of joy when I sent off that final student loan payment. We were debt-free! Afterward, it became easier to save and invest because we no longer had those loan payments hanging over us.

Still, Amelia’s Friedreich’s ataxia has resulted in extensive costs related to her medical care, modifications to our home, special equipment, and lost income due to time away from work. Our diagnostic journey was incredibly expensive. Right now, we are looking to buy a newer car, and the prices for ones with a ramp make my heart drop. Being mindful of our financial resources has been critical.

I sometimes feel guilty for not taking as many big trips — I want to make sure Amelia experiences as much as possible in the time we have together — but I also know it’s essential to maintain a financial cushion to be able to make informed decisions about her care. It’s all about finding that balance, sometimes on a daily basis.

I am grateful for all the sacrifices my husband and I made in our early 30s to get our financial house in order. It wasn’t easy, but it was worth it, and doing it has helped us provide the best possible care for our daughter.

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.