Student Spotlight: Despite Having a Rare Disease, Chris Holleman Embraces Life
Writer / Christy Heitger-Ewing
Chris Holleman’s parents recognized that something was off with their little boy when he was just five months old. He would go limp and have episodes of paralysis. As the months progressed, other red flags surfaced, such as “head drops,” then later seizures. Seizure medications only worsened his condition so at age 3, they put Chris on the ketogenic diet, a high-fat, adequate-protein, low-carbohydrate diet that’s used primarily to treat difficult-to-control epilepsy in children. Though the diet helped initially, he suffered a series of setbacks.
“He was a Riley kid,” says his mom Leslie, who lost count of how many times her son was admitted to the hospital for tests and treatments.
“It was frustrating as we tried to figure out what was wrong and how to make him feel better,” she says. “He wasn’t doing well at all.”
After many trips to various doctors and specialists, at age 10 Chris was finally diagnosed with Glut1 Deficiency. The ketogenic diet is the only treatment for this rare disease. Chris’ journey inspired his family to create the Glut1 Deficiency Foundation, a 501(c)(3) started here in Indiana that has grown internationally and to date has raised more than half-a-million dollars for research.
In 2017, Chris graduated high school with a certificate of completion and is currently participating in the Shamrock Project in Westfield, which is a transition program for high school graduate special needs students who still need vocational training following school. Chris helps with the food rescue program and soon will also be working at the new Riverview Hospital, rotating through various jobs such as food service and housekeeping details.
Chris (20) has three younger brothers: Ryan (17), Luke (13) and Sam (11). He also has a loyal, protective companion dog named Bell.
“Bell, a golden retriever, sleeps with Chris every night and if he’s not feeling well, she knows it before anyone else,” Leslie says.
When the family was in Louisiana in July, Chris had his first grand mal seizure. He keeled over and started shaking and Bell would not leave his side.
“When the ambulance came, she jumped in and laid on top of his legs and refused to leave,” Leslie says. “She wasn’t letting him out of her sight.”
Chris has never met a stranger and greets everyone with a giant smile. He loves to get involved in the community and volunteer at his church, St. Maria Goretti.
“When we leave church, he’s always the last one out of the building because he’s so social,” Leslie says. “He’s always asking about others.”
Chris, a huge fan of the Pacers, the Colts, the Cowboys and the Golden State Warriors, loves to go to the race track. He also enjoys fishing, boating and hanging out with his girlfriend. In addition, he’s involved in Special Olympics and recently returned from the state games where he competed in cycling.
His fortitude is admirable. In fact, he has a number of strengths that will serve him well in life. Besides his shining personality, he’s great at staying on task and keeping a schedule. He’s also detail-oriented and organized. That’s why the Shamrock Project is so great. It’s helping create awareness that these young men and women have skill sets and are employable.
Because Chris was one of the first to be diagnosed with Glut1, he’s been a pioneer in terms of helping with research, having been involved in studies with the National Institute of Health and Columbia University. For instance, when he started having a movement disorder during puberty, doctors tried various treatments to determine what worked best.
“It’s been that way with a number of things,” Leslie says. “We’ve worked with professionals to develop things other kids are now using to help them be more successful on a ketogenic diet.”
Though most of his physicians were eager to find answers, one, in particular, was callous and unfeeling.
“He told us to put a helmet on Chris and enjoy our other children because Chris was never going to be anything,” Leslie says.
Chris proved this doc wrong, over and over again.
“He’s a very determined guy — and very resilient — always has been,” Leslie says. “It’s God-given, this strength that comes from within, but it enables him to persevere.”
Student Spotlights are sponsored by Wittler Orthodontics