Photo courtesy of Susanne Napp.
A Van for Bryce
Susanne and Michael Napp with three of their children, from left, Mary Carolyn, Davis and Bryce. Since this photo was taken, the Napps have had a fourth child, Cameron.
A Van for Bryce - Facebook link
As he sits on the sidelines at a Chelsea Hornets basketball game, three-year-old Bryce Napp’s smile never leaves his face.
The son of high school teacher and coach Michael Napp, Bryce is beloved by team members and a common sight at most games, which he attends with his mother and three siblings. It does not seem to bother Bryce that he will never walk, run or dribble a basketball himself.
Bryce has semi-lobar holoprosencephaly, a condition similar to cerebral palsy in which the brain does not form properly. The disease, commonly shortened to HoPE by patients’ families, means that Bryce cannot walk, roll or speak, and he must be fed through a tube. When he tries to move, Bryce’s muscles become tense and inflexible. He cannot hold or play with toys and will likely be wheelchair-bound his entire life.
“He understands a whole lot of what’s going on around him,” said mother Susanne Napp. “His body just won’t cooperate with what he wants to do.”
Currently, Bryce can communicate through his eyes and basic sounds, and Napp said the family is looking into buying a machine that can help him “speak” through eye movements. Despite needing a wheelchair, a variety of medications and tube feeding, Bryce is almost always smiling.
“For all the needs he has, he’s healthy,” Napp said. “Most of the time he feels well and is happy.”
However, as Bryce grows older, it becomes more challenging to travel with him. Napp, a former special education teacher who stays at home to take care of the children, must lift Bryce and his wheelchair into the family van every time they go out.
The wheelchair alone weighs around 60 pounds, and it has become a two-person job. Napp is frequently forced to wait in parking lots for help lifting her son and his wheelchair.
The Napp family needs a wheelchair-accessible van so Bryce can continue to go to doctor’s appointments and attend his father’s basketball games. However, Napp said new vans fitted with foldout ramps can cost more than $50,000. Even older, used vehicles are about $15,000.
“You just don’t realize how expensive wheelchair-accessible vans are and what a help they are to people,” Napp said. “It would be amazing [to have one].”
Bryce’s grandmother, Dinah Byrd, entered the family into a giveaway contest for a wheelchair-accessible van, sponsored by the National Mobility Equipment Dealers Association. Until May 9, people can vote every day for the most deserving entries. After this, a panel of judges will look at the top 10 percent of entries and award the van based on need and each entrant’s story of overcoming and living with a disability.
Through social media and the help of family and friends, Bryce has gained more than 1,600 votes since March 11. Napp said she is “completely floored” by the support her family has received. To read Bryce’s story and vote for him, visit mobilityawarenessmonth.com or his Facebook page, A Van for Bryce.
