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Baltimore Teen performing in musical about disorder

Posted: 11:32 PM, Nov 08, 2018
Updated: 2018-11-08 23:37:37-05

JonCarlos Ley has been singing since he could talk.

The Carver Center for The Arts can now belt out opera in four different languages.

“It kinda just changes my entire mood whenever I start singing, I’ll be so much happier,” Ley said. “When I’m singing I just can’t think about anything else.”

Everything else has just been noise.

His mother Eillen Rivera Ley said that noise has been louder than ever this past year.

“Last year his dad died from cancer and JonCarlos actually sang with the boy Choir at the funeral which was very brave,” Rivera said.  “I’m just so glad because music made him happy and helped us get through this year. I went to every single concert. We just enjoy hearing him sing and his dad loved it too so he knows he was making his dad happy when he was singing.”

Born with two blind parents JonCarlos learned resiliency at a young age.

He was born with diabetes and a rare blood disease called hemophilia.

“It’s a bleeding disorder where I have a lack of factor 8 which is a clotting factor,” JonCarlos said. “If I get cut I’ll bleed a lot more than normal people it takes a long time. So I have to take factor 8 through an IV every few days.”

That means easy bruises and no contact sports.

It led him to music— finding his pipes through the Maryland State Boy Choir when he was 10.

“I was finally singing with boys who liked to sing. I wasn’t just that one music nerd in class.”

Now the high school senior is using his gift and his disorder for good.

He's one of 25 kids from around the country selected to perform in “Hemophilia: The Musical” putting the disorder in the spotlight.

He will go through a three-day workshop honing his skills culminating in the musical on Monday, November 12.

“Being at a big gathering like this is going to be great,” he said.  “Getting to see other people who go through the same kind of things as me every day.”

Never letting a rough note stop this musician from stringing together a positive outlook.

The musical was put together by BioMarin Pharmaceutical Inc., in partnership with Believe Limited.

To watch the live stream on Monday click here.