Miracle Kids: Little girl with rare genetic disorder gets help from Children's Miracle Network

Miracle Kids: Little girl with rare genetic disorder gets help from Children's Miracle Network
(Source: Kingery Family)
(Source: Kingery Family)
(Source: Kingery Family)

OTTAWA COUNTY, OH (WTOL) - The Kingerys were thrilled to add a baby girl to their family. So when doctors started showing concern that their little daughter Kara wasn't growing like she should, the family turned to Mercy St. Vincent Medical Center for help. That's when they learned that Kara's tiny features were actually symptoms of a genetic disorder so rare there are only 50 cases ever reported.

"It's not always an easy journey... It's not always easy to talk about," said 4-year-old Kara's mother Kelly.

Kara's story started before she even entered the world.

"We knew about half-way through my pregnancy that I was measuring really small," Kelly said.

Kara was born full-term weighing just three pounds, and doctors new something wasn't right.

"At our two-month NICU follow-up appointment at Mercy Children's they really noticed, you know, she's not thriving," Kelly said.

After several more appointments, tests and hospital waiting rooms, Kara was finally diagnosed with Short Syndrome.

"It is a very, very rare genetic syndrome," Kelly said.

In fact, Short Syndrome is so rare there are only 50 documented cases, and little is known about the disorder.

Characteristics include short stature, inability to gain weight and developmental delays.

Kelly recalls the moment the family received the diagnosis.

"You go through a whirlwind of emotions," she said. "Not knowing and finding out and then, you know, having a child that's different."

Kara is four and a half now, but developmentally she resembles more of a two-year-old, and she's only able to eat through a gastric feeding tube. But with the help of Mercy's St. Vincent Medical Center she'll continue to get the care she needs and could go on to live a normal life.

"I'm so grateful for Mercy and the specialists and the doctors there," Kelly said.

It's the generosity of those who donate to the Children's Miracle Network that gives children like Kara a chance.

"It makes a huge difference," Kelly said. "It makes a huge difference as a hospital and it benefits our kids. And you never know when it might be your child that needs it."

Don't miss the Children's Miracle Network Telethon on WTOL 11 coming up on April 12. 

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