Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Anna Morrow

AnnaMorrow1Name: Anna Morrow

Age: 11

Where do you call home? Baltimore, MD

Education: 6th Grade

Who do you live with? I live with my parents, sister Maggie, brothers Patrick and Sam, and dogs Libby and Delta.

What's a typical day for you? I get up get ready and go to school, I get home do my homework. After my school work is done, I have some free time so I will play with my siblings and/or ride my trike around the neighborhood.

How long have you known you are living with FA? I was diagnosed in June of 2015, when I was nine years old.

Are there any others with FA in your family? NO

What do you like to do to stay active and what type of exercises work for you to stay strong? I work out twice a week doing strength training and core exercises at a fitness studio in my neighborhood. I also love to ride my trike a lot.

Do you have any hobbies or special interests? I am a big Ravens fan. I also like to ride bikes and my trike with my family.

When FA gets you down, what do you think/do to feel better? I think of all my friends with FA and know that their going through this too and I’m not alone.

Tell us a little more about you. I love football and when I grow up I would like to work at the NFL. I also would like to travel to all of the rideATAXIA events. 

      + An interview with Anna's parents...Kristin and Ben Morrow

AnnaMorrow2What quality or trait has been brought out the most in our family despite living with FA? GRIT: Sticking it out in the face of obstacles and setbacks. Perseverance in order to achieve a long-term goal.

This quote reminds us that treatments and a cure will come, despite some disappointments along the way. We know that so many are working so hard to make it happen as soon as possible.

What did you find was the best way to discuss the diagnosis with Anna? Anna was only nine years old at the time of her diagnosis, so we chose only to tell her about how FA would effect her pertaining to the symptoms she was experiences, or had undergone testing for. Her scoliosis warranted the use of a brace, and she was aware that FA would cause her to lose her balance and have difficulty with coordination. Her heart was in good condition, but she had already experienced episodes of tachycardia, which walking to school difficult, at times. As our family became more involved with FARA, she became aware that some with FA use wheelchairs develop slurred speech. While we were hesitant at first to introduce her to those whose progression was more advanced, we have realized that it was the best decision we ever made. Anna has met so many wonderful friends and feels comfort in knowing others who are just like her. It has opened doors of communication about the use of a walker, a shower chair, and how to navigate the halls at school.

What advice would you give to other FA patient(s) who have been newly diagnosed? Reach out and get to know other families within the FA community. We have gained so much by forming friendships with other families. Anna has benefitted by knowing others that she was look to for inspiration, share stories, and ask questions. The support has been invaluable!

We also encourage Anna to exercise as much as possible. She does strength training twice a week and she and her dad have fitness competitions. We try to stay as active as possible, providing Anna the opportunity to ride her trike and move her body as much as possible in order to stay strong.

How has Anna inspired your life? Anna is amazing. But what sticks out the most about Anna is that she is so kind and brave. Even when she is having a rough day, we wears a smile and musters up the courage to keep going. I admire her confidence and ability to ask for what she needs. She inspires us to keep going, despite life’s challenges.

AnnaMorrow3How have you been encouraged for Anna’s future living life with FA? We are so grateful to those we have met in the FA community and those so dedicated to FARA. We are honored to be alongside those who have done so much already and never tire of hearing so many doctors and researchers highlight this amazing organization. It is encouraging to see so many in the healthcare community, as well as patients and their families, who dedicate so much of their lives to finding treatments and a cure through research. We know it will be here soon, and in the meantime, we have been provided with so much support.

What is one way FA has POSITIVELY affected your lives? We attended our first rideATAXIA a few months after Anna’s diagnosis. Our friends, family, and community rallied around us and provided us such strength, love and support. Since then, we have embraced this unforeseen journey and decided to make the best of it. Anna has participated in a drug trial and two research studies, taken some other trips just for fun, allowing for some wonderful travel and opportunity to meet others in the FA community from all over the country. We have enjoyed fundraising for FARA and feel blessed for all those we have interacted with and met along the way. Without FA, we never would have met all of these wonderful people that have become a part of our lives, and for that, we are grateful.

ErinONeil mtc sig 17

 


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.

 

More articles from this author