- November 23, 2024
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Joseph Parthemore wasn’t fazed when his father told a reporter that Joseph, now in eighth grade, was given four days to live when he was born.
“Then he had a ventilator, a trach, and they actually said he would never speak or breathe on his own,” Daniel Parthemore said.
“Doctors say that all the time,” said Joseph, who’s had more experience with doctors in his lifetime than any eighth grader should.
Joseph, who has Escobar Syndrome, not only speaks and breathes on his own, he plays trumpet with the Indian Trails Middle School band. Next year, he plans to join the Matanzas High School band and “march” with the other members of the Band of Pirates. Joseph has been confined to a wheelchair his whole life.
Escobar Syndrome, a form of arthrogryposis, is a rare genetic disorder characterized by restriction of the joints, muscle weakness and respiratory distress.
Joseph and his ITMS bandmates performed with the Matanzas band during the Pirates’ football game on Oct. 13. At halftime, Joseph’s mother, Leslie Parthemore, pushed Joseph's wheelchair onto the field, and Joseph played his trumpet.
“He actually could not blow out a candle when he was little,” Leslie said. “So for him to be able to play the trumpet is a miracle to me. He plays it very well.”
Joseph has always been musical, his parents say.
“He's always danced. His head would bop to music even when he was the tiniest little thing,” Leslie said.
“Even when he was in his worst,” Daniel said, “in a medically induced coma when he was sick, they had music on in the room and he shouldn't be moving, but his foot was always tapping to the music.”
Joseph said he has wanted to join the school band since he was little.
“Every year for Christmas, we’d go to the Flagler Beach parade. And of course, there was the band. And I think that's kind of where it started,” Joseph said. “And then I signed up for band last year for seventh grade.”
He picked trumpet through trial and error.
“I tried out multiple instruments,” he said. “I almost dropped one. So, obviously that wasn't a good choice. And then the trumpet’s just kind of easy. It's only three keys.”
When I listen to music, it makes me happy, but when I play the instrument, I don't know, it’s just beautiful.” — JOSEPH PARTHEMORE
ITMS Band Director David Morden said Joseph made it clear he didn’t want to be limited by anything.
“He said, ‘I can manage these three valves. Trumpet is what I want to do.’ And he’s doing a great job. We’ve not encountered anything he hasn’t been able to do. In band you have to sound like the person next to you and he does.” Morden said.
Leslie and Daniel met when they were both in the Navy. Daniel is now a sergeant with the Flagler County Sheriff’s Office. Leslie is a stay-at-home mom, taking care of Joseph and the Parthemores’ 9-year-old daughter.
“He has doctor appointments,” Leslie said. “I don't think there's anywhere (I could work) that would let me off that many times. We have surgery coming up probably later in the year. He's probably had over 20 surgeries, trying to fix his back, his legs.”
The idea of surgery doesn’t faze Joseph very much anymore, either.
“When I was younger, I was scared,” he said. “But now I go in there and I just chill in the hospital bed watching movies. So it's kind of fun. But then the aftermath is like, ouch. It’s not fun after. But I'm used to it.”
Joseph's voice is a little raspy. He was on a ventilator for the first year of his life and had a tracheostomy tube until he was 4, Daniel said.
Morden said Joseph is a quiet, positive presence in the band room.
“He’s one of the kids. He can crack jokes and he’s sarcastic just like the rest of them,” Morden.
Joseph is also involved in theater at school. He said he participates in all aspects of the productions, from script writing to props to acting. But he likes band best.
“When I listen to music, it makes me happy, but when I play the instrument, I don't know, it’s just beautiful,” he said.