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How a 6-year-old with two rare disorders inspired a country song about Kenny Chesney

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Nash Hensley, of South Bend, Indiana, was born with two genetic disorders: achondroplasia, a bone growth disorder characterized by dwarfism and phenylketonuria, or PKU, which causes the amino acid phenylalanine to accumulate in the body, according to the Mayo Clinic. PKU is caused by a defect in the gene that produces the enzyme needed to break down phenylalanine, so Nash has to live on a restricted, low-protein diet.

Hensley’s mother, Angela, told CNN that she also didn’t know her son would have him until days after his birth. He said doctors told him they believed Nash is the only child in the United States to have both disorders.

He said his son had an unusual amount of 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 does so much better.

He was oxygenated for two years, his mother said, and needed a decompression of his foramen magnum, the opening at the base of the skull where the brain and spinal cord connect. This opening is smaller in small people, which can make breathing difficult as the nerves cannot move so freely.

“In the early years of his life he has probably been in the hospital longer than most people will be in his entire life,” his mother said. “By the long road we’ve had, he’s doing pretty well now.”

Hensley was on a bipap machine for over a year, then a cpap machine, but now he is breathing on his own, an important step achieved in the last six months.

The role of Kenny Chesney

Hensley first found his love for Kenny Chesney when he was about two years old, his mother said, starting with the country artist’s “Cosmic Hallelujah” album. He listened to Chesney’s music before his sleep and MRI studies in the hospital.

“Whenever he did a sleep study or needed to be sedated by his MRI, because he’s had a lot of MRIs, he’s always listened to Kenny to help him get over it,” Angela said.

Hensley’s love of music helped him overcome the many trips to the hospital, which is why his mother could not pass up an opportunity to connect with Chesney’s composers.

The nonprofit organization based in Nashville Sing me a story it takes stories written by children who need it around the world and connects them with songwriters. Nash naturally wrote about going to a Chesney concert, with the help of his 9-year-old sister, Aleigha.

His mother said he was humiliated, the organization wanted his 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 that it’s not as important as the other because your child with a disability requires a lot more attention,” Angela said.

From storybook to a song

Austin Atteberry, the executive director of Sing Me a Story, told CNN that saying the story of Nash and Aleigha “jumped at us is a huge understatement.”

In the story, his family goes to a Chesney concert. Nash brings his ukulele, goes on stage and impresses Chesney so much that they invite him to tour with him.

The story-inspired song, written by the screenwriters themselves for Chesney’s song “Happy Does,” was performed Friday night at Sound Stage Studios in Nashville.

“It was amazing. I’m almost lost in words,” Angela said after her family listened to the song. He said Nash has been playing with his ukulele ever since, memorizing the words less than 24 hours later.

Sing Me a Story is working on creating a video for the song “Ukulele Strummer”, which will be available on the organization’s website once completed.

#Rareis, a program that highlights the experiences of people living with rare diseases and who partnered with Sing Me a Story on the project, will also have the song on their playlist.

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