
Age: 27
Where do you call home? St. Louis, Missouri
Education (degree(s): Bachelor of Arts in Psychology and Sociology
What is your relationship status? Do you have children? I'm a single Mom to the sweetest three year old boy, Eli! The best way to describe my living situation is by saying I have two homes. I live alone in a house that I stay at when Eli goes to his Dad's. It's a small slab home (no stairs) which is very easy for me to maneuver around in. When Eli is with me, we've been staying at my parents just for that little extra help I may need. Hopefully, within the next six months I can start transitioning Eli back to my house. He knows my do's and don'ts; what I can and can't do and helps me out without me even having to ask!
How long have you known you are living with FA? I've been diagnosed with FA for five and a half years now. My symptoms were pretty subtle for the years leading up to diagnoses, but really took a fast turn for the worse three and a half years ago during my pregnancy. Even though symptoms were subtle at first, I knew something was 'off'. Just walking to and from my car was exhausting. I couldn't run up and down the stairs anymore. I was noticing I had to be more cautious with each step. I kind of brushed it off thinking I had weak knees and was just a clumsy person. But my loved ones were more alarmed and suggested I get checked out. I went to my primary care physician and explained what was going on and she referred me to an ENT, thinking it could be an inner ear problem causing me to be off balance. Well, that wasn't it. The ENT kind of threw her hands in the air and thought it'd be best I see a neurologist. From there, the neurologist wanted to test me for MS (Multiple Sclerosis). I got an MRI of the brain, which showed no sign of MS. At this point, the Doctor was scratching his head and knew whatever was wrong was out of his reach. He referred me to a specialist in neurology at Washington University where I learned I had Friedreich's Ataxia.
Are there any others with FA in your family? Nope. Just me.
What do you like to do to stay active and what type of exercises work for you to stay strong? I see a personal trainer twice a week. I've been blessed to have a trainer who is able to find ways for me to stay fit and tweak things around so I'm able to achieve it. I go to a chiropractor once a week to keep me aligned and give me adjustments on my sore spots (typically my hip, neck and/or shoulders). I was seeing a yoga instructor privately, which I hope to get back into--stretching out the body is such a relief! I also stay up to par with physical therapy once a year. Insurance only allows 26 visits per year; so I definitely take advantage of those! Other than that, I try and walk [with the walker] around the house if I've noticed I'm sitting too long. Or hop down on the floor and stretch.
Do you have any hobbies or special interests? Ever since I had a child I've enjoyed being more arts & crafty. I love doing projects with Eli and making creative things as gifts or for my home. I'm a Pinterest lover, so I find a majority of my ideas on there. Now, that I can't get up and move around quite like I used to, I enjoy reading and watching lots of movies. I've also found a passion for blogging on my personal website: www.mywobblyworld.com--check it out! It's a great way to spread awareness about FA and give others an inside look of what life is like in my shoes. And my all time favorite thing to do is spend time with my little man!
When FA gets you down, what do you think/do to feel better? I remind myself that there are worse things in life.
What is one way living with FA has POSITIVELY affected your life? I definitely have found more appreciation for the little things. And I've grown to have more patience in myself. It takes me a little longer to get things done, but I just take a deep breath and do what I have to do.
What is a favorite motivational quote of yours? "What seems to us as bitter trials are often blessings in disguise." --Oscar Wilde
What is piece of advice that someone with FA has given you that encourages and inspires you? I haven't face-to-face met anyone with FA, yet; however, I really want to! I started writing my own blog about life with FA and have had other FA'ers reach out to me on social media telling me how much they enjoyed my journey thus far. Someone with FA, in particular, writes to me every so often and she tells me how much of an inspiration I am to her. She looks up to me and thinks highly of my bravery for sharing my life story. I can't begin to tell you how much that means to me. I'm so full of emotion that someone looks up to me as not only a person dealing with FA, but as a mother, too!
What is the first thing you want to do when a cure/treatment to FA is found? The very first thing I would do is put my headphones in and go for a run. Secondly, put some hot high heels on and go dancing. Running, heels and dancing are my top things I miss most.
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I don't let FA control me, I control it. Even though FA may get in the way of me doing things physically, all I have to do is find a way to overcome that obstacle and get it done.
How has FA specifically impacted your approach to parenting? Having FA while raising a child has its ups and downs but mostly, it's been quite rewarding. My son is the sweetest. He jumps up to help me every opportunity he has...holds the door open for me, helps me up and down the stairs, carries things for me... He understands what I can and can't do and without a beat, helps me! I think FA has played a big part in me raising quite the gentleman and I couldn't be more proud!
The way I spend my time with Eli is different than those without FA, but Eli and I are just as close if not closer than the norm. For example, if I want to take Eli to the park, I will bring GiGi, PaPa, or a friend with us to help with getting him in and out of the swing, push him, help him on the monkey bars... I want so badly to be able to do these simple things with him, but dwelling about it is not going to magically make me do it, so being able to be there and watch him have a blast is the way I can participate and I am blessed to have that.