Rare genetic disorder doesn't slow down Arlington Heights teen
At every junior varsity boys volleyball game at Rolling Meadows High School, sophomore manager Molly Birmingham takes her seat on the bench — and it's a prominent one at that.
She sits in the second seat, next to Coach Brett Olson. With clipboard in hand, Molly charts serves for Olson, and from time to time he turns to her for service percentages for players on the floor.
But that's not the most important role she plays. Coming off the court during substitutions, each player gives Molly a high-five, before acknowledging the rest of the team and making their way down the bench to take a seat.
“I tell them I'm their good luck charm,” the 16-year-old Arlington Heights resident said with a smile.
She also knows her volleyball. After the first game at a recent match against Buffalo Grove High School, Olson let Molly talk to the team in the huddle first. She called players out about their passing and energy.
Sure enough, they went out and won the next game.
“She's super supportive of the team and is just always there for us,” said junior Max Schertler of Mount Prospect. “She motivates us with her pregame and postgame speeches.”
It's become a tradition with the team that Molly breaks each huddle. In a strong and loud voice, she shouts: “Let's go! 1, 2, 3, Mustangs!”
Watching from the stands is Molly's mother, Jenny, who marvels about how far her daughter has come. At 8 months old, Molly was diagnosed with a rare genetic disorder, Hurler syndrome, which occurs in 1 in 100,000 births.
Children with the disorder are born without an enzyme that breaks down a particular sugar in the body. The sugars accumulate in the body around the heart, brain, vital organs, bones, and muscles and can leave the child with various physical and neurological disabilities.
Three months after being diagnosed, Molly would undergo a cord blood transplant from an unrelated donor at Duke University Medical Center and spend 75 days in the hospital. The transplant stemmed the effects of the disease, and she has remained healthy ever since.
However, during the last 12 years, Molly has undergone surgeries on her hips, knees, legs, foot, and spine. She uses a walker to help her with her lack of balance and strength, which is the toll the surgeries took on her lower body over time, and she receives regular physical therapy to help her with her balance — and possibly one day walk unaided.
Yet, Molly refuses to let her disease define her. Besides working with the volleyball team, she served as a manager for the freshman and junior varsity girls basketball team during the last two years. She also has been involved with Mustang Pals, a program geared at creating friendships between special ed students and their mainstream peers.
Molly tutors students at Westgate Elementary School in Arlington Heights, where she attended classes, through its Homework Heroes program. Last year, she served on the tech crew for the school's spring musical.
It was in her freshman math class last year, where she first met Olson, who taught the class. There was an immediate connection and they began talking about more than her algebra problems.
“The first thing she started talking to me was about sports,” Olson said. “She's a huge Duke basketball fan.”
He invited her to help out with his volleyball camp during the summer. Once she finished the basketball season, she jumped at the chance to help with this year's volleyball team.
“It's really fun and a great opportunity,” Molly said. “I get to talk to the guys and get to know all the players. They're really nice to me and include me in everything.”
She added that she is grateful for the opportunity and the chance to work with Olson, and the feeling is mutual.
“She always has a smile on her face, and she's so positive,” Olson said. “The boys see all the energy she brings, and it's contagious.”