Grand Junction teenager may be oldest person living with rare syndrome

Posted at 7:57 PM, Apr 19, 2019
and last updated 2019-04-19 21:46:04-04

GRAND JUNCTION, Mich. — Stacy Kelemen grabbed her son Cole’s hand and put it in hers in hopes that he’d wake up from his nap for the FOX 17 interview. She then kissed him a few times on his cheek and rubbed his head. However, he didn’t budge.

“You want to wake up and tell them a little bit about yourself,” Stacy said to him as he slept in his custom made wheelchair. “Show them some ninja moves.”

Stacy continued to kiss him as she called him ‘my handsome boy.’ She said she’s grateful Cole is alive considering doctors told her and her husband that he  wouldn’t live past his toddler years.

“They said he’d be lucky if he made it to 2 or 3, and 5 would be a miracle,” Stacy said. “Here he is.”

Cole is 19 years old today and has been living with Miller-Dieker Syndrome since birth. It’s a form of Lissencephaly which made the outside of his brain smooth.

“The nerves, when they start growing as a fetus they start at the bottom of the brain and grow up,” she said. “His kind of got lost in the middle.”

Last week at the neurologist’s office, a nurse asked if Cole was the oldest person living with his condition. Stacy didn’t know, so she went home and looked it up on the internet.

“Google says the oldest known is 17 years old,” she recalled. “Cole’s going to be 20.”

Stacy’s now wondering if Google can change that information and include Cole’s name. She wants the world to know that “20 is possible.”

“Hopefully there’s other people out there that are older than him or in his age range,” Stacy said. “I think with science, you know, kids can live longer now than what they could in the past.”

Science has helped Cole live this long, she said. When he was younger, he always had a cold and a lot of congestion. She noticed that he wasn’t growing and he choked on his food constantly.

“He has a lot of breathing issues,” Stacy said. “He got a tracheostomy when he was 7 years old I believe due to severe sleep apnea. And then two years ago he was put on a ventilator [because] his lungs collapsed at the bottom.”

Despite all the health challenges, Cole has kept an upbeat spirit with a funny and sarcastic attitude, she said. She calls him a miracle.

“On his fifth birthday we started having, we called it a mira-Cole party,” Stacy said. “So every five years we do a mira-Cole party. I mean we just throw a big bash: fireworks, a DJ.”

At his 15th party, 200 people attended. She’s hoping the next one in August is bigger. And hopes that by then Cole's name will pop up when someone googles 'Miller-Dieker Syndrome.'

“I’m not surprised that he’s here,” Stacy said. “I mean he has this overwhelming will to prove people wrong. You know, he’s like ‘oh you think I can’t do that, let me show you.’”