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FARAFARA Cure FA

Grace Smith

GraceSmith 1Name: Grace Smith

Age: 10 years old

Where do you call home? Austin, Texas

Education: I am in 5th grade.

Who do you live with? I live with my Mom Susan, Dad Scott, sister Stella (7yrs) and our dog Benji.

What's a typical day for you? In a typical day, I go to school from 9:30 - 2:00. I have a shorter schedule than my classmates and sister, because I get easily fatigued. On weekends, I can only do one big outing or event before getting tired. But I love being at home with my family, and have learned how to conserve energy while also having fun. I go to bed at 8:30, which also helps me have enough energy to enjoy the next day.

How long have you known you are living with FA? I was diagnosed when I was 8 years old. The first thing the doctor discovered was a murmur in my heart that turned out to be Hypertrophic Obstructive Cardiomyopathy. At the time of my heart diagnosis, I did not have visible FA symptoms. About 10 months later though, I saw a neurologist because my balance and coordination had become pretty poor. After noticing that I also had high foot arches, no reflexes, and poor proprioception, he immediately thought I might have FA. It was then confirmed it with a genetic blood test. 

Describe your transition from walking to walker/wheelchair. This past summer (2017) I began using a wheelchair to travel long distances, such as in an airport, museum, or the mall. The wheelchair helps reduce my fatigue and saves my energy. Even though I can still physically walk, it takes a lot of concentration to walk straight without falling or bumping into something. It also improves the way my legs feel at the end of the day. Also, this year I have begun using a motorized scooter at school. I can’t roll myself in a manual wheelchair because it would be dangerous for my heart. The scooter helps save my energy when moving in between classes, which I do often because 5th grade counts as middle school at my campus. When I’m home, I walk unassisted, but often fall and stumble. I need handrails to use stairs and hold my mom’s hand for support. 

GraceSmith 3What do you like to do to stay active and what type of exercises work for you to stay strong? I visit with my physical therapist every week and do various balance exercises. We often focus on knowing where my body is in space because that’s really hard for me. I like to play outside with my sister and walk my mini goldendoodle named Benji. I also enjoy being in a pool, especially in the Texas heat! My bedroom is on the second floor of my house, and I still climb our stairs multiple times each day. I want to keep using the stairs for as long as possible, because I know they help keep my muscles strong. But I can’t use them without handrails or if it’s dark.

Do you have any hobbies or special interests? I love playing board games with my family and watching movies at the theater. I also love science and all things to do with nature. I have a very special rock collection and enjoy learning about the earth. Reading books on my Kindle is another favorite thing to do, especially when I’m feeling physically tired. My favorite types of books are historical fiction and mystery. Right now I’m reading, “The Hour of the Bees.”

What is a good trick to make daily life easier? I always try to get a good night’s sleep and eat healthy food. These things help with my fatigue and overall pain level. I also enjoy taking epsom salt baths in order to sooth my muscles. Staying organized and planning ahead each day helps me prepare for any additional physical work or effort. My mom and I always look at the school calendar in advance of each day, so we can plan how I’ll get around or if I need to arrive at a different time than normal. Knowing what to expect from my environment always helps the day feel easier. And I’ve gotten comfortable with asking for help from adults and letting people know what I need.

When FA gets you down, what do you think/do to feel better? My dog Benji brings me more comfort than anything else. When I’m feeling down, he lays by me and I rub his fur and talk to him. And if I’m at school or somewhere without him, I can just think about him and feel better. I even have his picture in my school locker! Everything about him makes me happy. I also love listening to music and writing poetry when I’m feeling overwhelmed.

GraceSmith 2What is one way living with FA has POSITIVELY affected your life? We’ve met inspirational people that help remind me that lots of people are doing hard things. I’ve discovered that I have a lot of courage, more than I ever thought possible. I’m not as worried about smaller problems because I’ve learned to just feel grateful for the day. Even though it can sometimes be hard when other ten year olds seem to live an entirely different life than me.

What is a favorite motivational quote of yours? “You will always belong anywhere you show up as yourself.” - Brene Brown

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Be brave and you can do it. No matter how FA tries to make you live, you should always be yourself. If you stay true to yourself, then you are never out of place. Even when you might be in pain or sad or feeling alone. There are other people in the world fighting FA and other diseases. You are never really alone.

What is the first thing you want to do when a cure/treatment to FA is found? I want to just be a regular kid. I want to ride bikes, hike in the greenbelt, stay all day at school. I want to go to sleepover parties and stay all night without needing help. My heart condition keeps me from doing active things that used to be so fun…jumping on trampolines, climbing to the top of a tall slide, skipping rope, playing games in PE. I want a cure to give that all back to me.

"I have FA but FA doesn't have me." What does this statement mean to you? I think this means that even though I physically have the disease, it doesn’t change who I am at my core. I’m still the same person with the same dreams and joys. FA may have stolen some of my physical abilities, but it will never steal my spirit.

How do you live your life in the face of adversity? I focus my energy on loving my family and others around me. I don’t only focus on my disease. I accept love and kindness when it is offered, and I continue to show up everyday. I’ve learned that people can offer help in various ways, and I stay grateful to have people to lean on…emotionally and literally.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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