Health & Fitness

Trapped in time

At 6 years old, Owen Wild says "dada" and "mama" on a semi-regular basis, and his parents think they've heard "bus" and "more."

He gets where he wants to go by scooting forward or backward on his bottom.

He is fascinated by a wind chime hanging from a tree, will sometimes take drinks from a cup and can get himself undressed.

"Whatever he does, that's great," says his mother, Kirsten Wild.

"But I'm just accepting that he'll always be a baby."

Owen has cardiofaciocutaneous syndrome, or CFC. It's a rare genetic disorder that affects the heart, facial features and skin.

It's so rare that there are only 200 to 300 confirmed cases in the world — but Wild is sure there is at least one other CFC child in Wichita.

She believes that because the appearance of CFC children is so distinctive:

They all have a relatively large head, curly hair, low-set ears, a turned-up nose and other characteristic features.Most also have a heart defect and some degree of developmental delay, according to CFC International.

Because there are so few CFC cases, Rich and Kirsten Wild would like to find others, to share their experiences and to help someone else who gets the same diagnosis.

Owen, their third child, was born 10½ weeks prematurely. Kirsten noticed at birth that his ears appeared set low, but a nurse reassured her that he was fine.

Over time, other symptoms showed up, and when Owen was about 8 months old, the Wilds were told he had Noonan syndrome, a different genetic disorder that's more common.

There is no treatment for either, though symptoms for both can be managed.

Owen is "kind of in the middle" of the CFC spectrum, Rich Wild says. Some CFC children don't move at all on their own; others can walk.

The Wilds were told that if Owen wasn't walking by age 2, he probably never would.

But Owen recently started using a walker in his special education class at Explorer Elementary School in Goddard."He really loves to go to school," Kirsten Wild says. He has been in the program for three years and was in Rainbows United programs before that.

Owen sees all sorts of specialists — a cardiologist in Wichita, a kidney specialist in Oklahoma City and a neurologist in Kansas City, among others. The neurologist ordered the genetic testing that determined Owen had CFC.Long-term, the Wilds don't know what to expect for Owen. His cardiac status is good at this point, and he seems otherwise healthy.

He is on a number of medications, to keep his skin from itching, to help with acid reflux and for other symptoms. The medicine includes two antipsychotics because he bites himself, probably from frustration and to get attention. He occasionally bites others.

The Wilds feel lucky that he doesn't have seizures, as some CFC children do. "Thank God we don't have to deal with that," Kirsten Wild says.

But they have plenty to deal with.

Owen will always need care and constant attention. He may never have a bigger vocabulary than he does now.He seems to understand some of what's said to him, and he will take food by mouth sometimes though he also has a feeding tube.

Owen likes SpongeBob, the cartoon character. He likes to open and shut cabinet doors. He likes to play with bubble wrap and likes to tear toilet paper: He got bubble wrap and toilet paper for his birthday last year and was delighted.

He likes being outside, but skin issues mean CFC children aren't very temperature-tolerant, so he spends most of his time inside.

On a recent spring day, he scooted around the Wilds' front yard, grabbed a leaf from a weed and put it to his lips, and batted at the wind chime as his father held him.

"When he's this happy," Kirsten Wild says, "I just let him enjoy it."