Molly’s Kids: Preston Cope is the only child in the world with these two conditions

Molly’s Kids: Preston Cope is the only child in the world with these two conditions
Preston Cope of Gaston County will turn 2 this December. Especially important to note, considering this Belmont boy wasn’t supposed to live past his first few days of life. (Source: Family)

CHARLOTTE, N.C. (WBTV) - Preston Cope of Gaston County will turn 2 this December. Especially important to note, considering this Belmont boy wasn’t supposed to live past his first few days of life.

Preston was born with Cri-Du-Chat syndrome (chromosome deletion on the fifth chromosome) and partial trisomy 13 (another type of chromosome disorder where a part of the sixth chromosome is present three times in cells, instead of two).

The easier way to say that mouthful is that Preston lives with two rare genetic disorders.

According to his mom, he is the only one it the world ever been born with both.

“I had multiple health complications during my pregnancy, but Preston always appeared to be fine,” Tonya Cope said. “It wasn't until he was born that we realized something was wrong. When we heard him cry for the first time, it sounded like a little kitten. My first thought was to worry about not being able to hear him cry out at night.”

She paused. “Little did I know, that would be the least of my worries.”

Preston had a floppy airway and couldn't lay on his back. At two weeks old, a tracheotomy tube was placed.

Tonya says the doctors at the hospital where he was born initially had no idea what was going on. It wasn't until being flown to Levine's Children Hospital and undergoing genetic testing that Preston and his family got their diagnosis.

“Cri-Du-Chat syndrome is named after the cry of a cat because babies born with the disease often have a cry that sounds like a meowing kitten,” Tonya said. “It’s an odd sound because of problems the disorder causes with the larynx and nervous system.”

The other genetic disorder, partial trisomy, causes severe intellectual disability and many physical abnormalities -- like congenital heart defects or abnormalities with the brain or spinal cord.

“Because he’s the only one in the world with both disorders, doctors don't have many answers,” Tonya said. “They can’t tell me if he’ll ever walk or talk, and they say they expect him to have significant delays with other developmental milestones.”

But he’s still just a kid. He loves to laugh and loves his big brother, Ethan, who’s 11-years old.

“Our family is committed to taking it day by day and enjoy every second of his precious life,” Tonya said. “No matter where that takes us.”

#MollysKids

*Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.

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