Avon Lake student passes away after suffering from 2 rare genetic conditions

Editor’s Note: 19 News is saddened to learn of the passing of Cole Deban. The Deban family shared that Cole passed away overnight. Our thoughts and prayers are with them during this tragic time.

CLEVELAND, Ohio (WOIO) - While most of us are preparing to celebrate the holidays with loved ones, a mother and father are preparing to say goodbye to their son.

Avon Lake High School student Cole Deban entered hospice care on Wednesday at the Ames Family Hospice House in Westlake.

His mother Megan Deban cried as she told 19 News, “Cole’s the strongest individual I ever met in my entire life every day.”

But his pain is her grief and heartache because no parent should ever have to bury their child.

“He’s endured hundreds of surgeries and spent months and months in hospitals and still finds joy in every day,” Deban said.

Cole’s organs are failing and he’s suffering from two genetic conditions, including Phelan-McDermid Syndrome where the 20-year-old is one of 3,000 people in the world who suffer from the condition.

Cole is non-verbal, needs a feeding tube, is on oxygen, and suffers from seizures.

But to his mother, he is her son, her firstborn, and her pride and joy.

“I treated Cole like I would treat any other child. My other two children joke that he’s my favorite. But he’s a fighter and he’s just one of a kind,” Deban said. “From day one he was strong, he was resilient, he was a fighter. He came out crying and struggling to breathe, and he never stopped. He has fought his whole entire life.”

Sadly, Cole is living his final days at the Ames Family Hospice House in Westlake — praised for their pediatric hospice by Cole’s family, and a group of employees gracious enough to let 19 News interview Cole’s mother in a front sitting room, because she didn’t want to leave her son’s side.

“The Ames House is amazing. They are like family. They have a beautiful setting. It’s very homie and inviting. Their employees truly have compassion,” Deban told 19 News.

It’s that compassion that Cole has received from nurses and doctors throughout his life, and his family couldn’t be more thankful.

Even though Cole is non-verbal, his mother says he has a language all his own.

“At a very young age he loved to high-five. In support of him we asked people to trace their hands on a piece of paper and send it to us,” Deban said. “It’s those artistic high-five drawings from all over the world that are truly a gift this Christmas. They will decorate the walls in Cole’s hospice room along with Christmas lights.”

As a gift to science and the world Cole’s mother says her son’s legacy could help answer questions about the rare genetic conditions.

“I have agreed and I am working with the Austism Bank and the Phelan-McDermott Syndrome Foundation,” she said. “We are donating Cole’s brain to study and to help others so that we can learn more about the different symptoms.”

In the short term, loved ones and friends have set up a GoFundMe to help pay the massive cost of all those surgeries, hospital stays and eventually Cole’s memorial service.

His mother told 19 News, “Just like the day he was born, I was there in the NICU with him every day. I’ll be here in his last hours every day.”

Deban tells 19 News she wants to thank everyone who selflessly donated to help the Deban family deal with the medical expenses during this difficult time.