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FARAFARA Cure FA

Mary Nadon Scott

Name: Mary Nadon Scott

Age: 33

Where do you call home? Northfield, Vermont (Central Vermont)

Education: I received my Bachelor’s Degree in Nursing (Registered Nurse) from the University of Vermont in 2004.  However, I am currently a stay at home Mom.

What is your relationship status? Do you have children? I am happily married to my wonderful husband Kevin, and I have 4 children; 2 step-children (Isaac 10 and Bella 8) and 2 born to me (Elijah 4 and Gabriel 2).

What's a typical day for you? I am a stay at home Mom, and stay busy with my 4 year old in pre-school and my 2 year old toddler.  I also try to keep a regular work out routine with riding my recumbent bike, wheelchair aerobics, and alternating seasonally between aquatic therapy and wheeling laps on the track at a local university.

How long have you known you are living with FA? Growing up I was always the clumsy girl; tripping a lot, very poor balance, ran awkwardly, etc.  So looking back now, I can see signs of FA, however at the time, I always attributed most symptoms to having scoliosis (I was diagnosed with that in 8th grade, by a school nurse).  My FA diagnosis came later, when I was in college in 2002.  I have been living with FA for 13 years.

Are there any others with FA in your family? I am the only one in my family with FA.

Describe your transition from walking to walker/wheelchair. I began using a walker to help with my balance in 2004, and transitioned to using a wheelchair in 2007. My transition to a wheelchair was due to an increase in falls in an attempt to make safety a priority, while still maintaining my independence. 

What do you like to do to stay active and what type of exercises work for you to stay strong? I love to use my recumbent exercise bike, and enjoy doing wheelchair aerobics. However my favorite forms of exercise are aquatic therapy, and wheeling laps around the track at a local university.

Do you have any hobbies or special interests? I love to be outside with my children. I am very excited for this summer and being able to experience even more activities with them, such as going to parks, going on hiking and walking trails and even to the beach with my new GRIT Freedom Wheelchair. I also love to read. Living in Vermont with the long, cold winters, it’s a hobby that I share with my children, and we love to read books together.

What is a good trick to make daily life easier? I try to always find the good. It is out there, it’s just that sometimes you have to look hard to find it.  There’s always a reason to smile.  It takes more muscles to smile, than to frown.  So, it’s a good way to exercise!

When FA gets you down, what do you think/do to feel better? When FA gets me down, I try to think about and remember just how blessed I am. I have a very close family that is always there for me. I have a great support system of friends, community members and family that lives very close. All I have to do is make a call if I need help, or need anything. I am so blessed to feel such love and support.

What is one way living with FA has POSITIVELY affected your life? Living with FA has brought many positive things into my life.  It took me a very long time after my diagnosis to fully accept it.  Now that I have, I feel very supported and loved by my FAmily. Living with FA I have had the chance to meet and work with so many wonderful people in the medical community. I have also been able to participate in a 3 month long drug trial at the Children’s Hospital of Philadelphia (phase 2 RTA 408). It is a very exciting and empowering to be involved in research!  I truly feel like I am a part of a great team living with FA. I have met so many others with FA, or affected in one way or another, some of the most hardworking, intelligent, passionate, dedicated and vibrant people.  My FAmily inspires me everyday.

What is a favorite motivational quote of yours? “Winners never quit, and quitters never win”.

What is piece of advice that someone with FA has given you that encourages and inspires you? Be an active part in the journey toward finding a cure. Sometimes it makes me feel better knowing that I played a part, even if it was a small role. (paraphrased)

What is the best advice YOU could give to a person who has been newly diagnosed with FA? As a person living with FA, there is a lot of support out there.  It is also a very exciting time in the research community. I’d encourage you to take an active role in finding a cure, whether through fundraising, participating in a drug trial, or being involved in an FA live chat-room.  Alone we are rare, together we are strong.

What is the first thing you want to do when a cure/treatment to FA? Pick up my young children from a standing position, and walk hand in hand with my older children.

"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 have FA but FA doesn’t have me.  My two dreams in life were to be a nurse, and be a Mom.  I have seen both of those dreams come true.  FA has not stood in my way.  Even though I am living with FA, it only drives me to be stronger.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday!

 


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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