"When Mia was born at 39 weeks we believed she was a typically healthy baby girl. My husband and I were beyond happy to finally hold our little princess. Before leaving the hospital we found out Mia failed her newborn hearing exam. We hoped it was fluid in the ears but ultimately learned she was born with a bilateral hearing loss. This led to years of therapies, tests, and evaluations to learn the cause of the loss. Meanwhile every day, month and year that passed it was clear that there was much more going on with Mia.
After several years of meeting with geneticists and checking for dozens of chromosomal abnormalities it was determined Mia has Cornelia de Lange Syndrome. This syndrome can cause a host of physical, developmental, and intellectual disabilities. It explained why it took Mia so long to be able to sit and crawl and more than two years to be able to walk. Even drinking from an open cup was a big challenge for her. Many times while we were out and about I would hear moms having conversations with their daughters and it would break me inside. Mia is also nonverbal which means no conversations in the car, no silly questions to be asked, and no feedback from her on her first day of school. Still despite all the differences and the many things she can’t do on her own she still kept a big smile on her face.
Every summer Mia enjoys playing outside. She loves going into her little playhouse with her baby doll. She also loves her little tyke’s tricycle that we had bought her. She loved sitting on her tricycle and having us push her down the driveway. Due to Mia’s poor strength she always needed assistance with the pedals and she could never steer and control her feet due to poor coordination. But still Mia would sit on there and enjoy the summer days as much as she could. This summer Mia has clearly hit a growth spurt and no longer can ride her little toddler tricycle. It's been so hard watching her go outside and see the disappointment in her face as she watches her brothers grab their bikes and take off down the driveway. I can feel her sadness and her frustration of wanting to ride a bike like the other kids.
I started researching options for her and came across what is an adaptive bike. I knew it was exactly what Mia needed. We came across The Bike Rack and have been following Project Mobility for some time now and decided to go in and see what the bikes were like. Mia was able to get on a bike and test it in the parking lot. For the first time ever she was able to pedal on a bike and feel the breeze on her face as my husband helped her ride through the parking lot.”
Adriana Origel, Mother