Neurofibromatosis: Chloe's Story

Author: Mike Stephenson, Johns Hopkins

Published On: 05/28/2024

Walter was a relatively new friend when Chloe took him to prom, but they had been inseparable for a week. Tall, quiet and awkward, he looked good in his top hat and bow tie. He helped Chloe achieve a lifetime memory she thought she was going to miss.

Chloe, who was diagnosed with neurofibromatosis type 1 at age 2, was at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, when she realized the hospital stay would mean missing her senior prom at Alonso High School. Neurofibromatosis is a rare condition that can cause tumors in the brain, spinal cord and nerves.

Generally, the tumors are non-cancerous, but in some cases, treatments such as chemotherapy or surgery are needed to drain excess fluid. Walter — an IV pole Chloe named because she took it everywhere during her hospital stay — would stand in as her prom date.

Starting as a Joke

Chloe initially was joking when she said she should have her prom at the hospital. She already had the dress after all. But Johns Hopkins All Children’s nurses and Child Life staff seized on the idea.

“They got excited, and said, ‘We can make this happen,’” Chloe says. “The nursing staff mentioned that she would be missing her prom,” says Kellie Carlson, a Child Life specialist. “After speaking with the patient and family I found out she would be missing her prom but already had her dress and was excited to wear it.”

Read the full story here.