Towards the end of our Youth Unbound program in August of 2022, we got a call from our partners at Working Bikes that a family would like to donate an adaptive bike. Jody and David Wolfe asked for our help in finding a family that could benefit from an adaptive tandem trike that David would ride with their late son Ethan, who tragically passed away much too soon at the age of 12.
Ethan with Mom and Dad
Ethan was born in 2002, prior to the discovery of the gene that causes Charge Syndrome, making a diagnosis at that time impossible. He spent the first 4 months of this life in the Neonatal Intensive Care Unit before coming home.
Ethan had a g-tube, as well as deafness and some blindness, which are all typical with Charge Syndrome. Ethan’s first years were spent going through numerous surgeries, including a tracheotomy. He began therapies through the Early Intervention program, and began attending John Powers Center, a school for the deaf and hard of hearing, accompanied by a nurse. Ethan loved his routines of school, and was doing well. He was making good progress. He learned to walk independently, eat orally, and could communicate through sign language.
Ethan with older brother Daniel
Ethan’s quality of life was very important to his parents. According to Ethan’s dad David, it was important that Ethan’s life was more than just managing his Charge Syndrome and going about their normal daily routine. Kids need to have fun, including kids with complex medical issues.This desire to make sure Ethan was able to live a full, rich and fun life was what led the Wolfe’s to acquire an adaptive bike, a Freedom Concepts Tandem Trike. Ethan loved to go out biking with his dad, even when the seasons changed and cold weather set in. The adaptive bike met Ethan’s special needs, including low muscle tone, partial blindness as well as deafness prior to getting cochlear implants.
Ethan’s bike has found a new home with the Magana family. MNASR was instrumental in helping find the perfect recipients. 9 year old Caleb has cerebral palsy. The bike allows him to get out for rides with his father Alejandro.
Alejandro and Caleb out for their fitting and test ride at The Bike Rack in St. Charles.
Alejandro sent this note, “We took a ride just now and our son really enjoyed the exercise and fresh air.”
The generosity of Jody and David Wolfe’s donation of Ethan’s bike only scratched the surface in their efforts to help others with Charge Syndrome. In addition to David’s continued involvement as president of the Charge Syndrome Foundation, they established the Ethan Wolfe Recreational Assistance Program which has awarded over $100,000 worth of adaptive bikes, camp tuition, horseback riding and other activities that benefit those diagnosed with Charge Syndrome.
The donation of Ethan’s bike to Caleb and his family was particularly meaningful to the Wolfes because of the memories and connection to their son. We’re grateful that through the Wolfe’s selfless generosity Caleb and the Magana family will have years of fun and improved quality of life thanks to their new bike!
Major props to OOFD Adaptive Director Bradley Fisher for helping facilitate all of this from the Wolfe family to the Magana family with help from Working Bikes!
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