Boy with rare condition is able to say, 'Merry Christmas' for the first time

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LEXINGTON, Ky. (WKYT) -- Twelve-year-old Cody Dorman has been without a voice for most of his life. He's struggled to communicate due to a rare genetic condition he was born with, but just a few weeks ago new technology gave him a way to communicate.

"None of us, we don't have a guarantee about tomorrow," John Myers, co-owner of Backwater Outfitters in Lexington, said.

It's the season of giving and when tomorrow isn't promised, the smallest of gifts can be the biggest blessing.

"December 18, 2005," Leslie Dorman remembered. For she and her husband, Kelly Dorman, their small package was delivered 12 years ago.

"It took a little bit of time to find out what he had," Leslie said of the couple's son, Cody. He was born with a condition, Wolf Hirschhorn syndrome, meaning he's missing part of the 4th chromosome.

"We were told he wouldn't make it past two years old," said Leslie.

These last 10 years were no guarantee, but he's an overcomer. Cody has undergone 42 surgeries, countless MRIs, CT scans and trips to Cincinnati Children's.

"[I] wouldn't trade it for the world. He's taught us so much and he has blessed us," said Leslie.

Recently he's found his voice.

Family friends at Backwater Outfitters held a giveaway Saturday afternoon. Cody's sister, Kylie, made the announcement, but the biggest gift of all wasn't something the store was giving away. Instead, it was something they were receiving.

Cody, on the week of his 12th birthday, was able to say, 'Merry Christmas' for the very first time.

"It was a guessing game," Leslie said. "We had to guess what he wanted."

For his entire life he's been able to understand what people say to him, but never been able to talk back.

"He fussed a lot," she said.

A tablet, paired with his glasses, gives him the ability to tell mom and dad, and the world around, what he's thinking.

Kelly said, "Like, this morning he had a headache and instead of guessing what's going on, he could tell us what it is."

"Even the smallest things," Leslie said. "He wanted to look outside and watch it snow."

And because life's too short to be too serious, Cody has been cracking some jokes.

"Knock, knock," he said. "Ho, ho, ho. Merry Christmas to you."

He's certainly not shying away from saying he's done talking.

"Bye," he said.

But, that communication is the biggest gift of all.

"With him just being able to tell everyone, 'Merry Christmas,' I don't think you can put a bow on something that big," Kelly said.

The tablet Cody is using is on loan. The family is waiting for his permanent one to be approved by insurance. They hope this technology helps other children find their voice.

Here's something the family wrote up about Cody's condition:

The Story Of Our Miracle Child: Cody Layne Dorman

"Cody was born on December 18, 2005 at Central Baptist Hospital in Lexington, KY. He spent the first 12 days of his life and his first Christmas in the pediatric intensive care unit. When he was released from the hospital he remained on oxygen and had feeding problems.

Cody had two blood tests to diagnose him with Wolf Hirschhorn Syndrome (WHS), which is caused by a partial deletion of the 4th chromosome. There is no known cure for WHS. There is nothing anyone can do to prevent WHS from occurring. People with WHS require care on a 24-hour basis. 34% of children with WHS don't live past two years old.

Cody has multiple health problems. He requires a lot special equipment such as medical supplies, a wheelchair, specialized car seat, specialized bed, specialized chair for the home and has been on a feeding tube since the age of six months old.

Cody has numerous doctors appointments monthly at Cincinnati Children's Hospital and in Lexington. He has therapy and school four days a week, some of his therapy sessions is at Cardinal Hill in Lexington.

He is a homebound student due to his weakened immune system. He has a lot of MRIs, CT scans, X-rays, and scopes done frequently. Cody has been hospitalized several times due to viral infections, bacterial infections, seizures, he’s also endured 42 surgeries in his soon to be 12 years of life. He has a very weak immune system and we have to be very careful about getting him out and getting him around sick people.

Cody has recently been using a communication device & his world has changed. He is able to tell us wants and needs, and many more things in which he’s never been able to do before. He also loves telling knock-knock jokes with his device!

We live our lives minute-by-minute never knowing what is going to happen with Cody. Even though he has been through more in his 12 years than most people go through in a lifetime he still remains a happy boy who hardly ever complains. He’s also a very proud and awesome big brother to his little sister Kylie. And in return she is very helpful and protective of her big brother as well.

We are blessed to have Cody in our lives. Cody is truly loved and is our miracle child."

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Cody Dorman was born December 18, 2005.
Cody Dorman was born December 18, 2005.
Cody Dorman on his 12th birthday
Cody Dorman at Christmas time

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