We Are Committed to Helping Others.
RAFFA was formed after 9 year old Katie Lynn Snead was diagnosed with FA. Following two and a half years of different doctors, various blood tests, brain MRI, and misdiagnosis Katie was finally given the life changing news when she tested positive for Friedreich’s Ataxia.
When it was time to take the training wheels off her bike Katie resisted, saying like most kids, she was going to fall. At 7 she began playing soccer on a local recreational team and struggled to keep up with the other girls. Trying to run on the field looked awkward for her and the whole motion of running was not fluid. When she tried out for gymnastics she could not balance on the beam and when she started to ‘bounce’ off the walls in the hallways of our house we took her to the pediatrician. Referred to a neurologist, it was thought that she might have a brain tumor. The MRI came back negative. For the next two years she saw other neurologists, physical therapists, occupational therapists, and was actually diagnosed with sensory integration. Finally, on 4-14-14, she was diagnosed with FA. We were given the news, told there was no cure, and that there was no game plan.
We got on-line and found the FA parents group, an extensive worldwide support network. They have given us the courage to move forward and concrete ideas to help Katie as she progresses. There are various complications that go along with having FA; heart disease, scoliosis, diabetes, loss of hearing and vision. Katie has scoliosis and has to wear a back brace every night to help with the curvature of her spine. Another symptom of FA is fatigue. Katie has a hard time getting going in the mornings and tires quickly at the end of the day. She takes supplements three times a day to try and help her body accommodate what is not working properly.
In this first year of diagnosis Katie has traveled to UCLA to see the FA specialist, Minneapolis to take part in an MRI study, and the Children’s Hospital of Philadelphia for the FA symposium. Within our local community we have aligned ourselves with all the FA families in the area. All older than Katie they are inspirational to her and to us as a family. At Shriners Children’s Hospital, Portland, Katie has seen kids with many different kinds of disabilities and so to her, right now, having FA is not that bad. She is able to look at others and tell that they have it worse than she does. To look at Katie you might not think she has a disability, but if you watch her carefully you will see the subtle differences in the way she moves. These will gradually become more noticeable.
As a family we have made our own plan. That plan involves keeping Katie active as long as possible. She rides a recumbent bike and swims about 4 times a week at a local athletic club. We are embracing our new found friends and are actively involved in many of the activities in the disabled community. It was important for us to make people aware of this rare disease that our daughter has. We are setting up RAFFA to help those with FA and other disabilities. Please help us help others.