Caledonia girl born with rare condition needs help for upcoming surgeries

Posted at 9:23 PM, Jan 07, 2019

CALEDONIA, Mich. — Evie Paradowski is facing a long list of medical challenges and is getting ready for a big surgery and needs help. She is just six years old.

Evie was born with a rare form of dwarfism, and doctors didn’t expect her to live very long. She's defying the odds and also facing many other medical challenges, but she doesn’t let it dim her spirit.

Evie is a bubbly and creative little girl. She has every reason for it not to, but her spirit still shines bright.

"She was born with a really rare form of dwarfism called campomelic dysplasia," said Kassie Paradowski, Evie's mother. "It’s typically a lethal diagnosis; most kids don’t live past infancy with it. That is, if they even survive birth.”

Kassie Paradowski says Evie wasn’t expected to survive, but she did. She was faced with a long list of medical issues: needing a tracheostomy tube at birth just to breathe, a feeding tube, surgeries for rods in her legs as she grows, and cochlear implants for hearing issues.

"Her dad also has it, but we did not know that he had it until after she was born," said Paradowski. "It’s a very small community. There’s not a lot of research. Most doctors don’t know about it.”

They were shocked to discover Evie’s dad Corey also had it, with almost no symptoms. So far, Evie has undergone 28 surgeries, with three more already scheduled. The next is in Cincinnati at the end of the month.

"On the 24th, she’s going to have what’s called a slide tracheoplasty," said Paradowski. "They’re going to go in, and they’re actually going to cut her airway in half and remove that ring of cartilage, and then put the two pieces back together.” The procedure aims to make her airway larger.

Her family will have to spend at least three weeks in Cincinnati, then make more trips back and forth for follow-up appointments.

The family has set up a GoFundMe page to help with hotel bills, food, gas, and any other expenses, since they won’t be able to work while they’re away.

"We have to keep going. We do what you do, and we never want to show her if it’s hard for us," said Paradowski. "We’re not even the ones going through it, she is. So we don’t let it bug us, we try not to, right? We just keep going."

Evie is on a waiting list to get into the Ronald McDonald House, which will get the family out of A hotel, but they have been told the soonest they can get in is about 15 days. The family is trying to plan ahead for that.