Meet People with FA

Alena and Alisa

Alena is in fifth grade and is the oldest of three children. Her pets include two dogs and three gerbils, whom she loves very much. Alena plays the violin, is excellent at spelling, enjoys reading, loves horses, and hopes to be an artist, singer, songwriter, violinist, movie director AND author when she grows up! She is very talented, writing songs in her head and always coming up with new ideas for stories.

Two years ago, she was also diagnosed with Friedreich’s Ataxia. Her condition first became noticeable when she was only 5 years old. We noticed that she had trouble learning how to tie her shoes, button her jeans, roller skate, ride a bike and jump rope. Then we began to notice that she was very clumsy when walking and would trip and fall in odd ways. It wasn’t until she was 9 years old that we discovered that the worsening in her balance and coordination was caused by Friedreich’s Ataxia.

FA makes it difficult for her to write in school and she uses a laptop computer in class; she also is no longer able to participate in P.E. Having FA means that riding a bike or rollerblading is not possible and she becomes tired very easily. Alena uses a wheelchair when we go to events where there are big crowds or when there will be a lot of walking. Having FA also means that she spends a lot of time at doctors’ appointments to monitor her heart and spine. So far, the supplements that she has been taking have helped to keep her heart healthy, but there is nothing we can do to stop the progression of her ataxia or to stop aggressive curvature in her spine.

Last year, Alena received a Disney Cruise from Make-a-Wish. She wanted something that the whole family could do together, so the cruise was perfect. We were picked up in a limo and got VIP treatment at the airport. Alena got her hair braided in the Bahamas, met Mickey Mouse and all the Disney Princesses, swam in the ocean, saw musicals, saw fireworks at sea during the Pirates in the Caribbean deck party, hung out with other kids the Oceaneer’s Lab and even graduated from D-Sea-U (Disney Sea University)! It was truly the trip of a lifetime. Alena’s younger brother, Adam, said his favorite part was the food and swimming (in that order)!

Recently Alena has developed problems swallowing, and needs to use a thickener in her beverages. Her scoliosis has also progressed significantly over a short period of time; so, the time has come for Alena to undergo spinal fusion surgery to correct her curvature. Our plan is to have the surgery done after school gets out for the summer, right after MDA camp.

Alisa is Alena’s younger sister. She loves school and loves reading. She loves to play with her baby-dolls, Barbies, Polly Pockets and Groovy Girls. She also loves art and will spend hours drawing, coloring, painting, cutting and gluing anything she can get her hands on. But mostly she wants to do whatever her big sister Alena or big brother Adam are doing. Alisa may be smaller than most kids her own age, but she makes up for her small size with her love of life. She has a lot to say and loves to sing and laugh.

When Alisa was in kindergarten we felt the same familiar pang in our hearts. One of Alisa’s teachers commented on how Alisa would suddenly fall down while the class was walking in line and how she would lose her balance while standing still in P.E. class. Shortly before Alisa’s 6th birthday, she was diagnosed with Friedreich’s Ataxia. Being only six years old, Alisa had mixed feelings about her diagnosis. She already had an idea of what it was after seeing her sister deal with it every day, so she already knew that basics. Her first reaction was excitement, proclaiming, “Yes! Now I can get a Wish too!” Followed later by a more profound realization when she said, “I don’t want to be like Alena.”

Upon receiving the diagnosis, Alisa was evaluated by a cardiologist who found that Alisa has moderate cardiomyopathy. We were not totally surprised by this since Alisa has complained of chest pains from time to time. Alisa’s ataxia symptoms are still very mild, but we know they will get worse until a treatment is found.