Sing Me a Story Nonprofit Partners with A Little Boy with Achondroplasia and Phenylketonuria

Nash Hensley is six years old, but in his short life he’s already faced many challenges. He was diagnosed at birth with not one, but two rare diseases. First, Nash was diagnosed with achondroplasia which is a disorder that affects bone growth. Second, he has been diagnosed with phenylketonuria (PKU).

PKU causes a buildup of phenylalanine, an amino acid, within the body. It requires strict adherence to a diet that only includes low-protein foods.

Doctors think that he is the only individual in the country who has both conditions.

He has faced many issues with breathing and has faced many surgeries, MRIs, sleep studies, and more. Hey was on supplemental oxygen for 2 full years. He also had to undergo a decompression of the foramen magnum. Since he is a smaller person, he needed the the space between his spinal cord and brain opened in order to breathe better. He also had to be on a bipap for over a year. Nash also had to go on a cpap machine. But within the last 6 months, he’s started breathing fully without assistance.

His mother says it feels like he’s been in the hospital more than he’s been at home in his short life. Thankfully, today, he’s doing alright.

Creating a Song  

Kenny Chesney is a country music artist. Nash has always loved his music. At age 2, that is the artist he listened to before every sleep study and every MRI. It calmed his down, his mother Angela explained.

Sing Me a Story, a nonprofit based out of Nashville, Tennessee connects stories written by young children all over the world and gives them to songwriters. When Nash was given the opportunity to work with Kenny Chesney’s songwriters, the family couldn’t pass up the opportunity.

Nash’s sister Aleigha, who is 9, helped him write a story about going to a Kenny Chesney concert. Angela loves that they were both involved, and both got to feel important.

In the story, Nash brought his ukulele out on the music stage and played it for Chesney. Chesney was so impressed that he invited Nash to accompany him on the rest of the tour with the band!

Through this story, the songwriters created “Happy Does.” The song was just recently unveiled in Nashville.  

Angela said Nash memorized the words within 24 hours. He has been playing his ukulele ever since he heard it the first time.

Eventually a music video will be posted for the song on the Sing Me a Story website.

Additionally, the organization #Rareis, partnered with Sing Me a Story and will post the song on their own playlist as well.

You can hear more about Nash and his song here.

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