Impact

Meet Anberlin

At 12, Anberlin from Belleville, IL, has spent much of her life at SSM Health Cardinal Glennon. Diagnosed with neurofibromatosis (NF), she has had multiple surgeries and treatments since she was a toddler. "Cardinal Glennon has the neurofibromatosis clinic and the multidisciplinary care team I knew she needed to see her through long-term treatment," says her mom, Jenna. As part of NF clinic, Anberlin began seeing various specialists, including orthopedics, ophthalmology, and neurology. These visits led to additional diagnoses of food allergies and scoliosis. Over the years, she underwent torso casting and braces as part of her scoliosis treatment.

Between the reactions from her early food allergy and so much time in restrictive casts, food was something that often-brought Anberlin discomfort. In 2021, Anberlin's eating habits became a concern. She spent 27 days admitted in the hospital and throughout that time, she had 6 nasogastric tubes placed leading to an eventual gastrostomy button placement for an overnight supplemental feeding program. Despite numerous tests, no definitive cause for her weight issues was found. In March 2023, Anberlin was admitted again due to her low BMI. An inoperable tumor on her celiac artery (a plexiform neurofibroma) was discovered, and she started a new medication, Koselugo, to manage the tumor. She takes this medication twice daily EVERY day and will need to take it the remainder of her life. There are some challenging restrictions and side effects which are taking some time to get used to, but overall, she is staying focused on the positive.