Last year we started getting concerned that our oldest daughter Eleanor, who's now 8 years old, seemed to be showing signs of neurological problems. At school her teachers noticed her handwriting wasn't improving and that she seemed to be falling and bumping into things a lot more than the other kids. She had trouble staying stable on her bicycle, and couldn't stop without falling over. Our neurologist did an MRI, and there were no signs of cancer, the next step was to go through family history and see if there was anything that stuck out. My wife Kathleen has cousins in Irleand that have Friedreichs Ataxia, so we had her tested.
FA is a debilitating, life shortening neuromuscular disease. It causes progressive damage to the nervous system. It's a rare disease affecting roughly 1 in 50,000.
On August 19th last year, we received confirmation that Eleanor has FA.
We were crushed...
We were in shock, it was like a death in the family, I was grieving. Grieving for her "normal" "happy" "uncomplicated" childhood. The world turned into a swirling soup of medical terms... "frataxin", "hypertrophic cardiomyopathy", "GAA triplet repeat", "dorsal root ganglia"..
About a week after we received the diagnosis, is when I found out about Kyle Bryant and Sean Baumstark. I was laying in bed, and I found a trailer for the documentary film The Ataxian. You can watch it below go ahead, I'll wait.
The Ataxian Trailer from Redwood Creek Entertainment on Vimeo.
I must've watched that trailer 3 or 4 times in a row.
For the first time since she was given the diagnosis, I had.... hope.
It was a great reminder that the your reaction to the adversities of life is more than half the battle.
Since the diagnosis, Eleanor received a grant from the Challenged Athletes Foundation that we used to purchase a Catrike Pocket. She rides 3-5 miles on an average of 3 times a week. We're working hard to keep her strong.
Next week, on July 23rd we'll be riding with Kyle at RideAtaxia Chicago in Channahon IL. If you'd like to make a donation to FARA (Friedreich's Ataxia Research Alliance), and support Team Eleanor you can Donate Here every little bit helps. FARA is great organization, and we are so grateful for all of their hard work.
Thanks for reading,
- Adam & Kathleen and the whole Nottawa Wild Bird Supply Family