Oregon City teen battling rare genetic condition hopes to help others

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    OREGON CITY, Oregon (KPTV) — A 17-year-old in Oregon City born with a rare genetic condition is defying the odds one breathe at a time.

Michael Hayes has Jeune syndrome. It’s a rare form of congenital dwarfism that causes a deformity in his chest cavity and makes it hard for him to properly breathe.

An estimated 1 in every 130,000 kids are born with this condition. Hayes is one of them, as is his older sister Kristina.

Against all odds, Hayes is going to college to study genetics and hopefully prevent other kids from suffering from the condition. The saying “never take a single breath for granted” is on that Hayes lives by.

“I learned to be grateful for every breathe I can get because it’s a lot better than not breathing at all,” he says.

Since being born with the rare genetic condition, Hayes had been surviving on 25% lung capacity for most of his life. That capacity dropped to 20% after he had a growth spurt in 8th grade.

“When a normal person breathes, inhales and exhales, their chest expands and contracts with their lungs. Mine does not do that. It’s solid and it’s stiff, like a jail cell,” he said.

He received his first titanium rib implant when he just a year old. It was the first of 25 surgeries he has had in his lifetime.

His latest surgery was in March when he underwent an extensive 11-hour surgery to make extra space for his lungs.

“They broke seven or eight ribs on my left side, and they removed the defective titanium rod and they implanted a more acutely angled one, better to help the expansion of my chest,” Hayes said.

Hayes says the recovery was agonizing as he was intubated for eight days.

“Especially awake and conscious while having a tube stuck in your throat and you have mucus accumulating in your mouth almost all the time,” he said.

But he pushed through. With some grit and the promise of what was waiting for him at home.

Hayes is still recovering but is looking forward to heading back to his job at Jersey Mikes, and back to school to finish his senior year.

“Since I can’t do sports, I found to love school. Since it’s my strong suit,” he said.

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