Mom, son work through challenges together

BY ALEX SCHULTZ SPECIAL TO COLORADO COMMUNITY MEDIA

is is a story about a mother and her son, about life’s unsung heroes, about a small band of people who, although they may look “di erent,” are more like the people around them than not.

e son has Moebius syndrome, a rare congenital neurological disorder characterized by facial paralysis and the inability to move the eyes from side to side. Less than 50,000 people in the U.S. (or roughly 0.00015% of the country’s population) have Moebius syndrome, according to the Genetic and Rare Diseases Information Center.

e mom — despite not having gotten a full night’s sleep in her son’s 16 years of life, despite the boy’s need for four hours of therapy every day, despite having to work full time on top of it all — wouldn’t change a thing.

e love Kacie Nievesmassol has for her son Kevin couldn’t ever let her want anything else.

Well, maybe there is one thing she wishes was di erent.

“Just because Kevin looks different, don’t treat him di erently.

at’s my biggest thing,” Nievesmassol said, her wish surely extending to anyone who ever interacts with somebody with Moebius syndrome. “You need to say hi when you come to my house. Kevin can’t say hi to you, but you need to say hi to him. You need to acknowledge him, because he would probably love to say hi to you; he just physically can’t. Don’t ignore him. He knows exactly what’s going on.

“Just treat him like a human. Treat him like anyone else.”

And, in a lot of ways, Kevin is like most other teenage boys — he loves watching YouTube videos, he likes to go bowling, he goes to school, he’s an adrenaline junkie and, yes, he likes girls.

“It’s YouTube and girls right now,” Nievesmassol said. “He’s 16, what can I say.” e annual celebration was started in 2011 by Many Faces of Moebius Syndrome, which has grown over the years to become the largest all-volunteer Moebius Syndrome nonpro t organization in the world.

On Jan. 22, with an iPad playing YouTube videos in hand, Kevin, his mom and a couple dozen others — from Colorado and from other states — gathered at the Millhouse at Philip S. Miller Park in Castle Rock to celebrate Moebius Syndrome Awareness Day.

According to MFOMS president and cofounder Tim Smith, 30 organizations from around the world teamed up with MFOMS this year to help spread the word about Moebius Syndrome Awareness Day.

“ at’s what it’s all about. It’s about educating people,” said Smith, who, despite having Moebius syndrome, still works for Walmart, drives for Uber and runs a seasonal pest-control business.

MFOMS sponsors other annual events as well, including Riders for Moebius (a poker motorcycle run through the Colorado mountains), Camp Moebius (a four-day vacation getaway for the Moebius syndrome community) and Moebius Blessings (a program in which wrapped Christmas presents, a loaded stocking and a meal are provided to Moebius syndrome families who are struggling during the holidays).

“We all serve with our hearts,” Smith said.

As for Nievesmassol and Kevin, the mother said life can certainly be tough sometimes, but she pushes through because “I can’t imagine not helping someone or turning away someone who needs help. I can’t imagine doing it alone. I don’t think I could do it alone.”

Moebius syndrome a ects people di erently — some people only have the facial paralysis while others are dealt additional challenges.

Kevin, for example, has autism, club feet, Poland syndrome (missing pectoral muscle), Pierre Robin Syndrome (underdeveloped jaw) and sleep apnea, in addition to his facial paralysis. He uses a wheelchair to get around, a feeding tube to eat and an iPad-like device to communicate with others. He’s also had upward of 20 surgeries.

“He has the whole gamut of everything,” Nievesmassol said. “He’s way more involved than a lot of them.”

But, like his mom, Kevin is strong and lives life to the fullest. He goes to a special-needs school (science is his favorite subject), enjoys traveling and loves to scare his grandpa when the opportunity presents itself.

“He’s a little prankster,” his mom said.

In addition to caring for Kevin, Nievesmassol is a full-time nurse, has a younger son, serves on the MFOMS Board of Directors, organizes the Ride for Moebius motorcycle event every year and recently took in an 11-year-old foster daughter.

So, why does she do it all?

“I just want to be a resource for anybody who’s in a tough situation like I was,” Nievesmassol said. “I don’t want anyone to ever have those feelings of ‘ ere’s no help’ or ‘My baby’s not going to make it.’ I’m like, ‘Here I am. I’ll do it. I’ll help however I can.’”

Indeed, some heroes don’t wear capes.