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FARAFARA Cure FA

Beth Hanes

Beth HanesName Beth Hanes

Age 38

Where do you call home? Waterford, OH

Education degree(s): 2003 Bachelor of Arts in Education & 2008 Master's Degree in Education

What is your relationship status? Do you have children? Live with my husband Jason, and 8-year-old daughter, Jillian

What's a typical day for you? My typical day begins with the alarm at 5:15 am. After a two-hour battle, my daughter is on the bus, my dog is in her crate, my husband is out the door, and I have managed to get myself into the van for another day of work! I am a Title 1 Teacher full-time. This is my fifteenth year as a teacher, and I love what I do! I am so blessed to have an employer who has accommodated my needs for almost eight years!!

How long have you known you are living with FA? I was diagnosed with FA on April 25, 2011. My daughter was born in May 2010 and I fell with her in my arms when she was five weeks old. It terrified me that I had no idea what had happened, nor any control in preventing the fall. That's when I began searching for answers. It was almost a year until I found a definitive diagnosis.

Are there any others with FA in your family? There is no history of anyone with FA in my family.

Beth Hanes CollageDescribe your transition from walking to walker/wheelchair. Losing the ability to do anything is hard. I remembered the first day I used a walker at school. I was so nervous about how people would perceive my ability to teach when I had to rely on a walker to be mobile. That day, I had the ability to go to the opposite side of the building. That is something I hadn't done for a while because there was too much open space where I could not hold onto a wall. When that task was accomplished with a walker, I had more confidence in myself. After battling the knee pain from walking with a poor gait, I decided my body was telling me to go to a chair. I had occasionally used one at home that was given to me because I was physically exhausted and in so much pain. Now I use a chair full time. I have to make sure I am safe at school and have the energy to be a mother when I get home.

What do you like to do to stay active and what type of exercises work for you to stay strong? This is the area I am lacking in! Other than using a manual chair all day, I don't do any other exercising. I have good intentions, but never the energy after working all day.

Do you have any hobbies or special interests? My family loves to go to basketball games. My daughter plays, and we follow our local high school team. I am always up for any kind of road trip or shopping excursion too!

What is a good trick to make daily life easier? I guess I would say to smile through the sadness. I can't change the physical situation that I live with, but I can change my emotional state by being as happy and positive as I can.

When FA gets you down, what do you think/do to feel better? Less than 3 months after my diagnosis, my 14-month-old daughter was diagnosed with cancer. I didn't even get a chance to let my own devastating diagnosis sink in. Being a mother has always taken precedence over FA, so I would say I like to think about my daughter and how happy she is after surviving cancer, fighting Autism Spectrum Disorder, and battling ADHD every day. She is the one that is truly an inspiration!

What is one way living with FA has POSITIVELY affected your life? Because of FA, I have met many new friends and formed a closer bond to my family and loved ones. I know that God has truly blessed me with some amazing people!

What is a favorite motivational quote of yours? One Day At A Time!

What is one piece of advice that someone with FA has given you that encourages and inspires you? It's ok to ask for help!

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Never give up hope, miracles happen every day!

What is the first thing you want to do when a cure/treatment to FA is found? The first thing I want to do is walk out to my front porch, walk down the steps, smell the fresh air, look at the beautiful view, walk back into my home, and shout freely, "I'm Home!" I will no longer feel like a prisoner in my body and in my home!

"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 use FA as an excuse to miss out on what life still has to offer! It takes a lot more planning and making accommodations, to go somewhere, but I am rewarded with the memories that any person should be making! I still hold myself to the countless duties and obligations as a mother and a teacher, but just am limited by doing many of these things independently. I guess that this is just one way of being positive that I am never alone! Someone is always there to have my back! FA or not, that is the most important thing a person can have!

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