Anberlin

SSM Health Cardinal Glennon Children’s Hospital has been a second home for Anberlin since she was a toddler. By the time she turned four, she had multiple sets of ear tubes and two adenoid removals. When concerns about neurofibromatosis (NF) arose, something that runs in her family, Anberlin began care at Cardinal Glennon’s nationally recognized NF Clinic, which provides coordinated, multidisciplinary care.

At age four, initial visits revealed a whey protein allergy and scoliosis. Eliminating whey greatly improved her symptoms, and orthopedic specialists began closely monitoring her spine. Over several years, Anberlin underwent torso casting and later transitioned to bracing to provide her with more comfort and independence.

In 2021, Anberlin began struggling to retain weight and was hospitalized for evaluation. She was diagnosed with Avoidant Restrictive Food Intake Disorder (ARFID) and required intensive nutritional support, including tube feedings. Additional testing later revealed a plexiform neurofibroma encasing her celiac artery, an inoperable tumor associated with NF, which helped explain her limited stomach capacity and ongoing nutrition challenges. Doctors also discovered a second plexiform neurofibroma within her spinal canal, occupying roughly 50–75% of the space and significantly complicating her spine development and treatment. With the support of specialists across many disciplines, Anberlin gained enough strength to undergo halo traction and a successful spinal fusion surgery in July 2023. During her hospital stay, physical therapists and Child Life specialists helped her stay active, connected and hopeful. These experiences inspired her dream of becoming a Child Life therapist herself.

Today, Anberlin continues follow-up care and takes a daily medication to manage her plexiform neurofibroma. Through it all, she remains resilient, creative and focused on giving back to the hospital that has helped her grow.

How CMN funds helped Anberlin and kids like her:
Children’s Miracle Network (CMN) funds help support the Child Life program at Cardinal Glennon. Child Life played a vital role in Anberlin’s care. They helped her cope with long hospital stays, reduce anxiety, and feel a sense of normalcy and joy during some of her most challenging moments.