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Wis. family helps son, 4, fight rare disease

  • Article by: NOELL DICKMANN
  • Associated Press
  • January 25, 2014 - 12:05 AM

OSHKOSH, Wis. — Eye drops, eye drops, eye drops.

Throughout every single day Danielle Barron of Oshkosh puts them in her son Wilhelm's eyes, and every night she puts ointment on them.

The eye drops are everywhere — in her purse, in the car, in the living room, bedroom and even in her coat pocket. The Barrons don't go anywhere without eye drops for 4-year-old Wilhelm, donned Willie for short.

Willie was born with Moebius Syndrome, a rare disease that affects an estimated 2 to 20 babies per million, according to the Many Faces of Moebius Syndrome website. Fewer than 10 people in Wisconsin have it.

When Willie was born, the left half of his face was normal and the right side paralyzed. He has half a smile on the left, though if he's really laughing the right corner of his mouth and eyebrow twitch.

He has 10 teeth, and cannot blink, squint or move his eyes to the left or right. He also was born with strabismus, or crossed eyes, and with clubbed feet, but has had surgeries to correct those conditions.

Willie was later diagnosed with Poland Syndrome, which oftentimes goes hand-in-hand with Moebius. He's missing pectoral muscles and has deformed ribs, which causes an indentation in his chest.

Moebius Syndrome brings constant challenges, but the family's optimism, reluctance to be held back and love for Willie keeps them looking forward to each new day.

Willie was transferred to the neonatal intensive care unit at Children's Hospital of Wisconsin in Milwaukee after he was born. It would be about a month before the newborn could come home.

For the Barrons, it was a month of living at the Ronald McDonald House while their two young daughters who stayed back home, Trynadee and Kehanna, now 9 and 7, asked where their baby brother was.

It was a month of learning how to feed Willie, who couldn't pucker his lips or suck on a bottle. It was learning he'd need the eye drops every day and eye ointment when he sleeps. A month of going back and forth with doctors who seemed pessimistic about what their son's life would be like.

Thirty percent of those with Moebius Syndrome also fall on the autism spectrum. Barron said Willie hasn't been diagnosed and they'll cross that bridge if it's brought up in school.

Consulting with medical professionals has not been easy for the Barrons, who felt pressure from doctors to give their newborn a gastrostomy tube and a tracheostomy. Some people with Moebius need them because of swallowing and breathing issues, but Barron was determined to give her son the chance to eat on his own.

Despite pressure, disbelief and sometimes unpleasant interactions with Children's Hospital staff, she did.

"I was so proud of myself for standing up for me and my son," Barron told Oshkosh Northwestern Media (http://oshko.sh/1aIWiRL). "From then on I didn't stop putting my foot down."

She still encounters issues with medical professionals, many of whom have no knowledge of the disease, let alone know how to work with someone who has it.

Barron said it used to be very frustrating but she's grown accustomed to it.

"I've learned from other moms and parents and people with Moebius that we have to be the advocates for our children," she said. "Sometimes we have to teach the doctors."

The endless doctor visits and therapy sessions combined with two daughters in elementary school and her husband, Benjamin, working second shift, made for a rough first few years of Willie's life.

"It was emotionally draining," she said.

Willie quickly associated doctors with pain, and Barron would feel bad when the girls had to go and hear him screaming while being held down for a new cast fitting for his feet.

"You had to take a deep breath and be patient," she said.

It can still be a struggle to balance the family, even with less doctor visits and having taken a year off Willie's occupational, speech and physical therapy sessions.

While Barron and her girls wish they could have more mother-daughter time — Trynadee chimed in, "Mmm-hmmm!" — they've learned to be patient. Willie fills a lot of the stay-at-home mom's time, putting in eye drops, doing therapeutic exercises and trying to get him up to pace with other children his age.

The Barrons have had to teach Willie everything normal babies naturally figure out.

He learned to sit up at 9 months old, scoot around at a year, to walk at age 2 and he just mastered crawling up the stairs.

Still, his tongue and lips have limited movement, so he must be watched while eating in case he chokes. His favorite words are "truck" and "bolt" but he struggles with G, P, M and L.

It's the simple things most people don't think twice about that Barron has to be 10 steps ahead of the game on.

Birthday parties at the beach bring a bright sun, and wind, sand and water can painfully blow into Willie's eyes. He can't simply squint at the sky or blink the sand and water away — eye drops, eye drops, eye drops.

Most moms get a break when they take their kids to the playground, but Barron can't just say, "OK, go play!"

"I still have to walk with him up the stairs, I still have to go with him down the slide," she said. "He's a lot younger than what he is because of his delays."

Willie can't express himself through his face like most people do. The patient family asks yes-or-no questions when he's upset, because it can be hard to understand what may make him so.

"We're just trying to teach him to express himself," she said. "It's all a learning experience for us."

When feeling overwhelmed, Barron said she says a prayer and talks with her husband. She finds support online through the Many Faces of Moebius website and other networks. Barron is a Moebius ambassador for Wisconsin as well.

Despite the hardships that come with having a child with a rare disease, there are plenty of positive outcomes too.

The Barrons are a close-knit family because they spend a lot of time at home, though that's something they'd like to change.

Making crafts like ornaments, painting and playing lots of games on the Xbox are some of the family's favorite things to do.

"I like being together," Kehanna said while painting with Trynadee at the kitchen table on a Friday evening. Willie and Benjamin settled in the living room with the family's dogs, Rhino and Trixie, watching "The Fairly Oddparents."

Trynadee and Kehanna have a blast with Willie, who has a big sense of humor, they said. The girls giggled as they recounted the new words he's learned — "gross," ''meatballs" and "right now" —and him jumping around like a frog or pretending he can fly.

"I like Willie," Kehanna said in between laughs. "He's a funny boy."

Barron calls the girls her little helpers. They like to help him eat and practice walking on the stairs. Trynadee proudly recalled how she held his hand while going down the stairs a few days ago.

Willie has taught them to not judge others by what's on the outside, Barron said.

Later, everyone took to the living room floor to play with toy dinosaurs, cars, tigers and more. They laughed and crawled around on hands and knees while Willie, wearing gray glasses and holding a toy shark in hand, pretended it attacked a whale in his mom's fingers.

Barron doesn't know what the future will bring for her family. Her protective instincts kicked in as she talked about questions like, "What will school be like for Willie, who will never be able to play contact sports, and who might still have trouble articulating his words?"

However what she does know is that she's optimistic and always has been — she wouldn't want a different son.

"Poor me" is not in their vocabulary, and the family takes nothing for granted, she said. Barron wants others to know that anything can be overcome through strength and belief in yourself.

Doctors said Willie wouldn't eat on his own, but he did, and Barron believes the possibilities of what her son can achieve are as high as the sky.

"I think the future holds great things for us," she said.

An AP Member Exchange Feature shared by Oshkosh Northwestern Media

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