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FARAFARA Cure FA

Emily and Andrea

Name: Emily Therens

Age: 14

Where do you call home? Spokane, Washington

Are you married? Kids? Single parent? Haha, enjoying being a teen!

Occupation/Employment: Freshman at Shadle Park High School.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was just recently diagnosed but I have been living with symptoms (poor balance, falling, fatigue, fainting, problems with my hands) for several years. My Mom asked my doctor about this at every single visit but no one took her seriously.

Do you have any known family history of similar symptoms to FA? Not that we know of.

What do you like to do to stay active and what type of exercises do you do to stay strong? Walking and doing physical therapy exercises. We are going to start going to the gym too.

Do you use any tech aides? if so, what works or hasn't worked for you? We are experimenting with trekking poles.

What's your most comfortable pair of shoes to wear? I'm a teen girl so I wear lots of sandals and boots but I never wear heels and if I plan to walk a lot I wear my Nike Frees. Do you have a diet plan you like to follow, and why? My mom increased my protein, but other than that, not really. We are still learning what's best.

Do you participate in adaptive sports of any kind? I'm unable to.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? It's made me appreciate things and people more.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Stay positive!

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Make sure people are treated in order of how badly they are affected and then thank whoever is responsible.

"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 am responsible for my own attitude and well-being, not FA! I believe we can slow things down if we take better care of ourselves and stay mentally strong and positive.

 

Strong support systems are so important! The FA Community is filled with some of the most incredible supporters. :) Andrea is Emily's mom. Read Andrea's interview below. With such a supportive and encouraging family foundation, no wonder Emily is so strong and resilient!

 

What quality or trait has been brought out the most in Emily despite living with FA? She has seemed to have matured into a very positive person since the diagnosis has been made. She also seems to be more appreciative of her step dad and I and has been a better big sister to her two siblings!

What did you find was the best way to discuss the diagnosis with your daughter? We actually met with the neurologist as a family and kept things very open. After that appointment on the way home we continued talking about it and have continued to do so, again very openly, ever since. I also encouraged her to go online and do her own research. She want's to be able to connect with other's and has plans to start a fundraiser already. What advice would you give to other parents whose child was just diagnosed? Don't look at this as a death sentence. I was shocked by how many of our friends and family went into almost a mourning state after being told the news. I feel people have been afraid to talk to us like maybe they don't know what to say. This disease doesn't have us yet! We are going to fight and be strong for Emily. The biggest thing I tell anyone who asks is that we don't know how she is going to be affected yet so let's not make any assumptions! I would also encourage other parents to not let google get the better of them! Leave things to your healthcare team! They will let you know when it is time to worry! In the mean time just LIVE!

How has Emily inspired your life? As I mentioned before, seeing her be able to be positive right now has really made me stop and think. As a mom it definitely isn't easy getting news like this but I couldn't imagine how she is feeling! She has commented on future things like boyfriends and driver's license but at the end she always reminds me that she isn't going to let others get her down and she is going to live as normal of a life as possible! It's no question in her mind that she will be going to college and having babies some day! She's not going to let this ruin her plans!

How have you been encouraged for Emily's future living life with FA? I guess I don't worry about things that we cannot control! I too believe she will enjoy all of the things she deserves in life and more. I can definitely see her using this diagnosis to help others in some capacity and that makes me really happy!

 

A very BIG thank you to all our parents, brothers, sisters, grandparents,
aunts, uncles, cousins, friends and caregivers!!

We are stronger together! Find a new "Meet the Community" interview every Monday. Stephanie

 


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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