How Friedreich’s Ataxia Brought Me Closer to My Faith

My family and I have always been religious, with strong beliefs, faith, and morals. My mother is Catholic and raised my sister as such. My father, an Episcopalian, raised my brother and me in his church.

From elementary school to high school, I attended church and Sunday school weekly. I loved it. My dad taught my Sunday school class every year. It was fun and engaging to learn from him because he has a vast knowledge of the teachings and he made complex readings easy to comprehend.

Matthew, my brother, is in his junior year of high school, and my dad still teaches him. He plans to finish when Matthew graduates. My dad has been so involved that he is now the superintendent of our church’s Sunday school. Over the years, our family has collected so much guidance, love, and support that we call our parish our second home.

I moved away from home for college. I was uncomfortable with being away from my church, so I never tried to find a new parish. I lost sight of my commitment to church attendance. Due to this, I did not feel like myself.

It was not until my Friedreich’s ataxia (FA) diagnosis at age 21 that I rebooted my relationship with God and church. Being a young woman away from family and home, I needed guidance and answers for why I was given this life hardship at the time. It was, and still can be, difficult to go through hard-to-accept adaptations and changes, such as lost independence and walking abilities, and increased fatigue.

However, I know I have this disease for a reason: I am strong enough to fight this fight as a role model for the FA community. I know God has a plan for me. I also know I have special lights (family, friends, and the church parish) to get me through my toughest days. As Paul McCartney wrote, “Let it be.”

Soon after my diagnosis, I sought Episcopal churches in my school’s area. I felt a connection to one and attended multiple Sundays throughout the year. On every break and holiday at home, I made a point to go to my old parish with my dad and Matthew.

Each time I attend, even to this day, members of the church community say they are praying for my family and for an FA treatment or cure. They also contribute each year to our family’s Mother’s Day 5K Race for Christina by raising awareness and funds at different charity events held at our church. Small acts of kindness like these go a long way!

Ephesians 5:2 in the Bible says: “Walk in love, as Christ loved us and gave himself up for us, a fragrant offering and sacrifice to God.” This verse speaks to me because it reminds me that even though I live with Friedreich’s ataxia, I still walk in love because of my church community. Even when times get tough, I think of my wonderful parish standing by my side through every obstacle, along with God.

This past weekend, my parents and church family wanted to have a pre-celebration for my upcoming wedding. Following mass, there was a beautiful cake and other treats to have over coffee while connecting with one another. It’s such a great feeling for my fiancé and me to know we are not alone in any instance. We couldn’t be more grateful.

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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.