Oh, the Places You’ll Go…Our daughter Lilia Fisher is an 11 year old girl who has faced many obstacles in her life. At age nine, Lilia was the 14th person in the world to be diagnosed with GATAD2B-Associated Neurodevelopmental Disorder, also known as GAND-- a syndrome that results in both cognitive and physical disabilities. Lilia has battled severe hypotonia her whole life. If it weren’t for intensive physical therapy she began receiving at 6 months old, Lilia never
would have been able to walk. Despite all of the obstacles Lilia’s disorder has presented, Lilia has overcome them. Lilia went from being a girl who might never walk or talk, to one who now, with intensive supports, therapies, and adaptations, can walk, talk, read and write, and is even learning to ski. Lilia has outgrown her very rudimentary tricycle, and we want a bike that can match this little girl’s dreams!
To get Lilia to her first bike of her own was a long road. She started off on an infant seat on the back of her father’s bike, then progressed to a trail-a-bike, but it had to be adapted. Project Mobility helped modify the bike with a backrest and a seat belt. Her grandpa made running boards for her to securely rest her feet on, complete with velcro straps. Eventually, we decided that Lilia was ready for her own independent bicycle. Lilia took her first bike riding camp for children with special needs, “I Can Shine,” but was unable to succeed in balancing the bike, or visually attending. We decided to try a recumbent trike, and she immediately “got it.” We knew what Lilia’s first bike would be!
Lilia has grown by leaps and bounds. Her tricycle is too small for her almost five foot frame, and Lilia can also now ride for much longer distances than she ever could before. She needs a bike that has a drive-train that would allow her to ride more efficiently, exerting less effort for a girl with severe hypotonia, and this would allow her ride independently to the park like she sees other kids her age do, but also go on longer bike tours. She is desperate for that independence!
Lilia loves biking and the outdoors, and hopes to go on a week long bike tour next summer. Part of that would be on a tandem, but part of that could be Lilia riding independently, too! She needs the right bike for a trip like this. We have never let Lilia’s disabilities get in the way of what she wanted, but we need help. We incur significant expenses related to Lilia’s disability, all the time trying to plan financially for a child who will need additional support for her entire life. We just want a means to get her to all of these places. Oh, the places she could go...