Hanging on the pink walls of 16-year-old Melanie Mejia’s Lodi, New Jersey, bedroom are side-by-side signs declaring “NEVER GIVE UP.” Suspended from those signs are dozens of medals from archery, track and field, and swimming competitions.
Today, Melanie has her eyes on one day competing in the Paralympics, but just eight years ago, she was in a medically induced coma.
Melanie’s world, and that of her parents, Soledad Carrasco and Alexander Mejia, underwent a drastic overnight change at the end of 2016, when 8-year-old Melanie woke up with a high fever. Later that day, she went to the emergency department, unable to walk and having a hard time breathing.
After a series of tests, including an MRI and a lumbar puncture, also known as a spinal tap, Melanie was put into a medically-induced coma for several days. The testing determined that Melanie had acute disseminated encephalomyelitis (ADEM). ADEM is a rare autoimmune condition in which the body’s immune system causes heightened inflammation in the brain and spinal cord, leading to confusion and muscle weakness.
Doctors do not fully understand how ADEM is triggered, but it most often occurs after an infection or cold. In most people with ADEM, effects are temporary. But in Melanie’s case, brain and spinal cord damage compromised her legs so much that she can’t walk unassisted.
Life was not easy after she left the hospital. Speech, occupational and physical therapists, among other medical specialists, helped her recover and adjust following her release from an inpatient rehabilitation facility, but her life was very different.
Melanie’s mother chokes back tears when recalling how her little girl went from running around outside with her friends and playing soccer to needing a wheelchair to get around and having to be catheterized by a nurse during school hours so she could relieve her bladder. “It was very hard to adjust this new lifestyle for my whole family,” Melanie says.
Overcoming a Second Health Set-back
In late February 2021, Melanie developed a butterfly-shaped rash across her nose and muscle weakness in her arms. Sivia Kerry Lapidus, M.D., a pediatric rheumatologist, diagnosed her with juvenile dermatomyositis, an autoimmune condition not related to ADEM.
Following this latest diagnosis, Melanie began seeing pediatric physiatrist Michelle Sirak, M.D., the division chief of Pediatric Physical Medicine and Rehabilitation at Joseph M. Sanzari Children’s Hospital at Hackensack Meridian University Medical Center. Dr. Sirak’s goal was to help Melanie regain function so she could have some independence.
“She was 13 years old and wanted to be able to shower, get dressed and do day-to-day stuff on her own,” Dr. Sirak says.
Dr. Sirak and Melanie worked on making sure Melanie was using her wheelchair and walker properly and on using bracing to help her be as independent as possible.
Soon after her diagnosis, Melanie’s physical therapist told Melanie’s mother about a local adaptive sports club. At first, Melanie wasn’t too excited about the idea of going to the club. “My mom was like, ‘Let’s do it just once,’” she says.
Her first time at the club, Melanie got in the pool but still wasn’t sold on continuing to go. But the second time she went, she saw a girl in a wheelchair get in the pool. “I saw her swimming kind of normal, just not moving her legs. I thought, ‘If she can swim without moving her legs, then I can, too,” she says.
Two months later, she competed in her first swim meet. “I felt free,” she says. “I felt alive.” In the weeks that followed, Melanie’s mom no longer had to drag her to the sports club. Soon, she was competing in swimming, archery, and track and field, and also started ballet and acting.
Helping Melanie Be the Best Athlete She Can Be
With all the physical activity placing different demands on her body, Melanie again turned to Dr. Sirak. But this time, the conversation changed. “Now we discuss her body positioning and what adjustments can be made to her chairs and other equipment so that it works for her so she can be the best athlete she can be,” Dr. Sirak says.
For instance, Melanie works with Dr. Sirak on different kinds of bracing she can do or use if she has to do standing-based activities, including trying out a neuroprosthetics device that electrically stimulated her leg muscles, helping her to move much better. Her walking improved greatly when she used the device, but it is not covered by her family’s insurance. However, a foundation later donated them to her.
In July 2024, Melanie participated in the Hartford Nationals, a six-day competition for athletes from all over the country with physical, visual, and/or intellectual disabilities. The experience fueled her ambition to one day compete in the Paralympics.
“Doing these sports is like saying, ‘I’m not disabled,’” Melanie says. “I’m able to do things, just in a different way.”
“Our goal is to try to remove barriers and support our patients no matter what challenges they may be facing to help them achieve their maximum function and goals,” Dr. Sirak concludes.
Next Steps & Resources
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