Six-year-old Henry loves visiting the helipad on Penns Landing where his father is a Skyforce10 pilot. But Henry’s genetic condition makes it hard for him to hear the roar of the helicopter and soon enough he may not be able to see it take off either.
At least 60,000 people are affected by Usher Syndrome; a disease that results in hearing loss and vision impairment.
Pilot Phil Norton and his family became familiar with the condition when their son was diagnosed. Despite living without his sense of hearing and rapidly losing his vision, Henry and his family are working hard to ensure he has the life of a typical kid.
Henry has cochlear implants so he can hear sounds, but he still communicates through sign language.
His vision is also deteriorating. He currently he has a 15-degree field of vision, which is comparable to looking through the opening of a straw. Most people see through a 180-degree field.
Henry is learning braille to prepare for when he loses his vision completely.
“Kim and I, we’re dealing with it, but I think it’s harder for us right now than for him. I think he compensates real well," Phil said. “When we got the news about the vision loss, I still choke up when I talk about it."
His mother believes that research of the genetic condtion may help Henry regain his vision eventually.
The Norton family is so devoted to supporting Henry that they created a foundation in his name -- Help Henry See and Hear.
The New Jersey non-profit helps individuals and families affected by Usher Syndrome, according to its website. They support research, provide information and offer social opportunities, as well as offer other assistance, for those who are deaf and blind due to Usher Syndrome.
The Nortons are hosting the foundation's 2nd annual fundraiser Sunday from 11 a.m. to 5 p.m. at the Flying W Airport and Resort in Medford, N.J.
Guests will be treated to live entertainment, bounce houses, swimming, raffle prizes, helicopter rides, a visit from the Phillie Phanatic and much more. The foundation is also taking donations through its website.