Hensley’s mother, Angela, told CNN that she didn’t even know her son would be born until days after he was born. He said doctors told him they believed Nash was the only child in the United States with both disorders.
He said his son had unusual breathing problems compared to other people with achondroplasia. But after a long journey of surgeries, sleep studies and relying on machines to get enough oxygen, Hensley is doing much better.
He was on oxygen for two years, and needed decompression of his foramen magnum, the opening at the base of the skull where the brain and spinal cord connect, his mother said. This opening is smaller in younger people, which can cause breathing problems because the nerves can’t move as freely.
“In the early years of his life he’s probably been in the hospital longer than most people will be in their entire lives,” his mother said. “From the long way we’ve had it, he’s doing great now.”
Hensley was on a Bipop machine for more than a year, then a CPAP machine, but is now breathing on his own, a major step achieved in the past six months.
Kenny Chesney’s character
Hensley first found his love for Kenny Chesney when he was about two years old, his mother said, beginning with the country artist’s “Cosmic Hallelujah” album. He listened to Chesney’s music before bed and studied MRIs at the hospital.
Angela said, “Whenever she’s done a sleep study or needed to be sedated for her MRI, because she has a lot of MRIs, she’s always listened to Kenny to get her under control. To help him get it,” Angela said.
Hensley’s love of music helped him get through many hospital visits, which is why his mother couldn’t pass up an opportunity to connect with Chesney’s musicians.
Their mother said she was humiliated, saying the organization wanted her children to work on the project.
“When you have a child with a disability, like Nash, as a parent you never want the other child to feel like they’re not as important as the other because your child with a disability needs a lot of attention,” Angela said. “
From storybook to song
Austin Atteberry, executive director of Sing Me A Story, told CNN that Nash and Alegha’s story “jumped on us like a big miss.”
In the story,…