Passionate about helping others, and planning for a career to serve others
Liam O’Reilly has never known life without pain. However, the 12-year-old and his family refuse to let his diagnosis and limitations determine his life, now and in the future. In fact, Liam has been working to pursue his professional career since he was about 2 years old, despite his disability.
At 15 months old, Liam slipped, hitting his head on the bank of a pool, breaking multiple bones, and causing his growth plate to move. Within three months of his fall, Liam was diagnosed with complex regional pain syndrome (CRPS) in the lower extremities. CRPS is a progressive disease of the autonomic nervous system characterized by constant, burning pain.
Within a year of his fall, Liam was also diagnosed with Kohler’s disease, a rare bone disorder of the feet where the bones temporarily lose blood supply, causing the tissue in the bone to die—and the bone to collapse. To date, he has broken one of his legs eight times and the other three times.
Kohler’s disease is usually outgrown during puberty, so while Liam may still have problems in the area of his initial injury, the bones in his feet have begun to regain density, structure, and size. This process will take a few years.
Although Liam spends time at the hospital for infusions, continuing care, and surgeries (he has had four so far this year), his mother, Carainn, says, “We have not let Liam’s diagnosis define him, and have raised him to be a fully-functioning person with the aspirations to try everything.”
Liam has done just that. With the help of Section 504, which ensures a child who has a disability receives accommodations to allow for academic success and access to the learning environment, Liam is an honor roll student—despite being on hospital homebound education the past several years. He is enrolled in the Ingenuity program, which accelerates his education and requires double the number of hours in a subject area compared to kids in his grade at school.
Liam returned to seventh grade part-time this fall for his core subjects. “It is all in pursuit of my professional career as a pediatric doctor for children with illnesses similar to mine who don’t have the necessary resources available to them,” he says.
Life on Liam’s terms
Liam’s parents, Carainn and Barry, and older brother Arann, have helped him adapt his life so he is able to do everything he wants to. In fact, Liam followed in both in his father’s and brother’s footsteps to become a Boy Scout. The Boy Scouts of America by-laws state that modifications must be made for individuals with disabilities, but the family has not needed to avail themselves of that option. Liam participates fully and is earning every badge available to him. He is currently the rank of Tenderfoot and is working on his physical fitness badge.
Liam is also a basketball champion with the Charlotte Rollin’ Hornets. The team is part of the National Wheelchair Basketball Association (NWBA) for players of all ages; Liam joined the team two years ago. The Rollin’ Hornets Purple Prep (his team) won the championship in their 13-and-under age group at the NWBA’s National Tournament in Louisville, Ky., for the 2017-2018 season.
Liam cooks daily and says that if he is unable to meet the physical demands of becoming a doctor, he would like to be a chef. “It’s my favorite pastime,” he says as he describes different dishes he cooks. His favorite thing to cook is omelets, although his parents’ favorite is his “extreme cheese mashed potatoes.” He is often appointed the cook on Boy Scout overnights because he is always cooking for his troop.
A lifetime of conquering pain together
When asked to describe his pain, Liam often struggles, and Carainn notes, “He hasn’t known what life without pain feels like, so it’s hard to put what his pain feels like into words.” Although it is difficult for Liam to articulate his pain, it is easily seen by those who know him best.
Carainn and Barry can see the pain as he gets dark, almost black, circles under his eyes. The exhaustion and pain he experiences daily is unimaginable; however, he seems to take it in stride. Liam recalls the last time he was at school and stood up and broke his foot. Despite his immediate pain, school staff required him to walk down the stairs and out of the school, without any of his assistive devices, during a fire drill. Liam simply says, “Yeah, that hurt pretty badly.”
Liam is also extremely grateful for his best friends, whom he has known since preschool. Despite the five of them all attending different schools today, they continue to participate in Boy Scouts weekly and talk to each other often during online gaming. Liam says his friends provide comic relief and assistance when he needs it (without him even asking). They treat him like a normal kid, unlike most of the kids at school, who aren’t understanding at all and often ask personal, brazen questions.
Being an advocate for himself
“We decided early on that Liam should be an advocate for his own care and search out as much information as possible,” says Carainn. Liam has done just that, recently becoming the first pediatric ambassador for SoftWheel, a company that has reinvented the wheel by providing “in wheel” shock absorbers allowing for a smoother, more comfortable, and energy-efficient wheelchair ride.
Liam’s work with SoftWheel has given him the opportunity to work with other companies to find more helpful products for differently abled individuals, as well as find products that will continue to be helpful for him, now and in the future.
Liam is also an honoree of The Sandbox, a nonprofit run out of Charlotte serving the greater Charlotte area and parts of South Carolina.
The Sandbox provides support to children with life-altering conditions and their families. From meal drop-offs during long hospital stays to their annual Evening of Believing Prom, the Sandbox has been a constant source of care and support for the O’Reilly family. At last year’s Prom, Liam was one of the honorees, and this fall Arann will become a mentor to a teenager who suffers from a life-altering condition.
“We have raised Liam with aspirations to try everything and if you fail, try again; failure is only part of learning,” says Carainn. Liam is not shy about sharing his aspirations, a testament to the way he has been raised and the individuals he has chosen to surround himself with. At 12 years old, Liam is passionate about his professional plans to be a doctor, and his back-up career plan to be a chef. Liam’s life may not be typical; however, his attitude, spirit, and drive are truly inspirational for individuals of all ages and abilities.
Levine Children’s Hospital: carolinashealthcare.org/medical-services/childrens-services
The Charlotte Rollin’ Hornets: rollinhornets.cloudaccess.net
The Sandbox: gotsandbox.org