- Associated Press - Saturday, January 25, 2014

OSHKOSH, Wis. (AP) - 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.”

Story Continues →