Last day of February also shines light on rare disease day

Posted at 3:09 PM, Feb 28, 2021
and last updated 2021-03-01 09:46:33-05

COLLEGE GROVE, Tenn. (WTVF) — It's the last day of February which is also known as rare disease day. It's a chance to raise awareness on rare diseases like Intestinal Malrotation.

Meagan Short is the founder of The Intestinal Malrotation Foundation.

The mom, now living in College Grove, Tennessee, started the foundation for her son after he was diagnosed with the rare disease.

Her son Camden was born prematurely at 35 weeks. Short says he was vomiting yellow bile and green bilious vomit which are hallmark symptoms of a medical emergency.

After doing multiple tests, at first, doctors couldn't figure out what was wrong.

A few hospitals later, they discovered Camden had a rare disease known as Intestinal Malrotation. He had lost 85% of his bowel.

"They noted that his intestines were fully twisted," Short said.

Although doctors told Short surviving this illness was very slim, she refused to give up hope.

Eventually, Short found a doctor in Boston who specialized in this rare disease and they flew out to get Camden the care he needed. After almost a year living in Boston, things were looking up.

Fast forward to today Camden is now 5 going on 6 years old.

"Right now he is doing incredibly well," Short said. "He's vibrant and loves cars and video games, reading and he's bright and spunky."

Camden has also learned to celebrate the things that make him unique.

"We talk about his anatomy and what he needs to be strong and he accepts it and feels empowered by his G-tube," Short said. "He thinks it's his superpower to be able to eat orally and through his tummy too."

Often times with rare diseases, there isn't much research on the illness. Short adds that there's this population that hasn't been championed for. It's why she continues to advocate for children battling rare diseases today.

To learn more about Intestinal Malrotation and the foundation, click here.