Brittany Sommerfield 1 Name: Brittany Sommerfield

Age: 28

Where do you call home? Manitoba, Canada

Education (degree(s): : It’s at a complicated point. I was (still am) a travel agent. Most recently I worked from home casually but as many others in the industry, the COVID-19 pandemic hit hard. I took a break and I found new focuses. I am a FARA ambassador on the leadership team, I do bookkeeping work on my father’s self-employment, I volunteer with APC (Assiniboine Park Conservancy- mostly at the zoo) and other odd jobs.

What is a current goal you have with your education? I am thinking of focusing more professionally on bookkeeping, hopefully remaining in the travel industry. I will absolutely remain within the ataxia community, of course it personally interests me, I also learn so much and it is very rewarding being with FARA, Ataxia Canada, and other organizations. Working with APC is new but I love it and I don’t plan to leave.

Who do you live with? My parents. They are pretty good roommates.

What's a typical day for you? It tends to be different. Weather is a huge factor. I’ll work-out, I’ll plan video calls or have zoom meetings a couple times a week. GST reports, timesheets, email cleanouts, family time (I have 2 sisters and 3 nephews and we are very close), house chores, seeing some friends, going to the local zoo or park to volunteer; these are just some things that are always in my week. It helps my mental and physical health to be busy (within reason).

How long have you known you are living with FA? I was diagnosed with Friedreich’s Ataxia in early 2007 after sending bloodwork to Ottawa. It happened fast, I was never misdiagnosed which I found is pretty common with this condition.

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Are there any others with FA in your family? Yes, my sister, Chelsey. Some family members have tested themselves to learn they are a carrier (one copy of the recessive FXN gene, no symptoms).

Describe an adaptation and/or transition you have had to take due to living with FA. I was determined to finish grade school without aid, I did it but pretty quickly after graduation I started using a walker in 2012. In 2017, I had emergency major intestinal surgery due to a Crohn's disease (dx 2006) flare up. While recovering I used a wheelchair. When I realized how much more independence it gave me and the improvement in falls, I didn’t go back to my walker, I wasn’t nervous to go out and explore the world anymore. They say, “use it or lose it.” which is true in my experience but I don’t regret it at all. In 2019 I got a motorized chair for long distances and traveling.

What do you like to do to stay active and what type of exercises work for you to stay strong? Something I can’t stress enough is how important it is for FAers to keep active. I’ll try (being the operative word) to work-out at least 3-4 times a week, either yoga (on my bed or a mat) and dumbbells at home, going to the gym, physio, or using the pool (summer only)... I’m fully wheelchair-bound but I’ll stand for 15min or more daily holding on to a bar.

Do you have any hobbies or special interests? That’s a loaded question… Working out, traveling, volunteering, YouTube/Netflix, video games with my nephews, board games/cards, being with friends, cooking/baking, definitely sleeping…

What is a good trick to make daily life easier? Coffee, hands down. Remembering to laugh at the things you can’t control is a good trick too.

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When FA gets you down, what do you think/do to feel better? Thinking about people I care about, and just focusing on anything else.

What is one way living with FA has POSITIVELY affected your life? Being a part of this awesome community. Plus the fact it has taught me to be grateful for all the little things.

What is a favorite motivational quote of yours? There is so many, but one I’ll never forget; "When life gets you down, you know what you gotta do? Just keep swimming." — Dory, Finding Nemo

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Being told and just knowing that I am not alone. For many years it was just my sister and I.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? ? It's gonna be hard. Its not a journey that comes with a simple path and it'll definitely try to block any pathway you make. But remember you're strong, keep moving, even if it's only step by step. Don’t dwell on the past, It's enough to try your best in all that you're doing now. Even if you fall, it’s okay, you will get back up again.

"I have FA, but FA doesn't define me." What does this statement mean to you? How do you live your life in the face of adversity? For one I don’t let this ataxia beat me, I was, still am and will always be a person, this disease is only a small part of me. There will definitely be times I’m not going to believe it but it’s the truth, I just need to remember that to keep it true.

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What is the first thing you want to do when a cure/treatment is found? I am very fortunate my family owns a cabin at a lake nearby. Ataxia has taken going for “a quick dip” away. One day I’ll run on the sand into the water and/or jump off the dock again.

Tell us a little more about you… My illness has changed me, mostly for the better. I can see value in such a better light. It has been tough, I won’t lie, but I am who I am today because of it and I am pretty proud of who I am. Having Crohn's disease on top of friedreich's ataxia has definitely pushed the challenge, but at the same time it has made me a warrior. I have hardships- I don’t know anyone who doesn’t, but I still think I’m lucky. I live in this great country, I have a big loving family, some of the greatest friends, my health other than the obvious is taken care of, and, for the most part, I am happy.

Interviewed by

Interviewed by Andrea Kiess