In between clinic visits, 12-year-old Anberlin from Belleville, Ill., sat in SSM Health Cardinal Glennon Children's Hospital’s ground floor atrium with her Starbucks beverage talking about her favorite things. She talked about her love of Legos, cats, Harry Potter and reading.
“One of my cats is named Hemingway,” Anberlin said. “I love reading and I love writing. And when I am a children’s author one day, I am going to donate my books to Cardinal Glennon.”
SSM Health Cardinal Glennon has been a second home to her since she was a toddler. Diagnosed with neurofibromatosis (NF), Anberlin Gripp has had multiple surgeries and treatments across various specialties throughout her life. “Cardinal Glennon has the neurofibromatosis clinic and the multidisciplinary team that I knew she needed to see her through long-term treatment,” said her mom, Jenna Gripp.
As part of the NF clinic, Anberlin began seeing various specialists, including orthopedists, ophthalmologists and neurologists. These visits led to additional diagnoses of food allergies and scoliosis.
Between reactions to early food allergies and time spent in restrictive casts for scoliosis, Anberlin’s eating habits became a concern. In 2021, she spent 27 days in the hospital where nasogastric tubes and a gastronomy feeding button provided supplemental feeding.
Despite tests, no definitive cause was found for her inability to gain weight. In March 2023, Anberlin was readmitted due to low body mass index. An inoperable tumor on her celiac artery was discovered, and she started taking a new, lifelong medication to manage the tumor.
In June 2023, Anberlin underwent halo traction and spinal fusion, and additional surgeries are planned in the future. She and her mom, Jenna, are grateful for the support from their Cardinal Glennon family.
“None of this is normal for a 12-year-old girl to have to deal with,” Jenna said. “But the staff make our time here as normal and as comfortable as possible. From the Welcome Desk staff to the cafeteria staff to her medical team and beyond, the staff take an active interest in us and work with us in every way possible to give my girl excellent quality of life.”
Learn more about the neurofibromatosis services at SSM Health Cardinal Glennon Children’s Hospital.
