One day before her first birthday, Elliot Parker was diagnosed with LAMA2 muscular dystrophy (LAMA2-MD), an extremely rare genetic disorder that causes weakness and atrophy of the muscles, including her lungs. She is currently one of just 250 registered cases in the world.
Parents Caitlin and Andrew knew Elliot would require care from multiple specialties and coordinated care would be crucial to her treatment plan. Pediatric pulmonologists Dr. Ashley Chadha and Dr. Rosemary Megalaa are at the center of her care.
“Elliot utilizes a shake vest, cough assist device, and noninvasive ventilation to help her mobilize mucus from her lungs and get more restful and safe sleep,” said Dr. Chadha. “In the absence of these support devices, she would be at risk for recurrent lung infections and possible respiratory failure.”
In addition to pulmonology, Elliot receives care from cardiology, gastroenterology, neurology, and orthopedics. In 2022, she had major back surgery to insert growing rods, a surgical treatment for children with scoliosis. The procedure included consultations with Elliot’s cardiologists and pulmonologists to assess her lung capacity and ensure she could handle the anesthesia. By working in concert, the teams reduced Elliot’s 96-degree spinal curve to less than 20 degrees.
“It’s unfathomable that Elliot can receive this level of care through one health care system so close to our home,” Caitlin says. “The communication and efficiency of having her care under one umbrella has been integral to her success, and critical to my husband and I being able to cope with the needs that were made apparent in her first few years of life.”
While her parents continue to seek opportunities to help her find ways to make a place for herself in the world, Elliot continues to take each day as it comes, whether that’s with art projects, gardening, or Minecraft.
“Elliot will tell you that God made her just the way she is on purpose, for a purpose,” said Caitlin. “And we wouldn’t have it any other way.”