Meet Rosemary: A Boston Children’s Hospital Champion

Meet Rosemary: A Boston Children’s Hospital Champion

During Family Advocacy Day, Rosemary and her family will discuss her health journey, Boston Children’s Hospital's role in providing her with necessary care, and why we must invest in the future of patients like Rosemary.

Rosemary was diagnosed with chronic recurrent multifocal osteomyelitis (CRMO) at a local hospital when she was 10. “Her diagnosis was clear from imaging, but how to manage her care was not,” says Kate, Rosemary’s mother. “She was seen by multiple specialists and really struggled with early treatment and communication with her providers.”

Rosemary, a Boston Children's Hospital champion,
is participating in Family Advocacy Day 2023.

The rheumatologist Rosemary saw, had only treated five patients with the disorder and Rosemary needed to be somewhere that could accommodate her learning differences and specialized care. This motivated Rosemary and her parents to seek a second opinion at Boston Children's Hospital.

When Rosemary was first diagnosed, she had to go through a lot of confusing care and stop physical activity all at once, which proved to be a challenge for Rosemary. “Once coming to Boston Children's she felt and heard that her doctor had her best interest at heart,” says Kate. “It was reassuring for the family to have a specialist who was confident in the next steps and who understood Rosemary's frustration at being limited from participating in physical activities.”

Rosemary is followed by rheumatology and dermatology and receives regular imaging such as MRIs and X-rays at Boston Children's. She has tried multiple medications to control her symptoms. When she has a flare, she receives IV infusions at a satellite site for multiple consecutive days in outpatient care.

Currently, Rosemary's CRMO is under control. She has developed challenging skin issues and started seeing dermatology at Boston Children's, as well. In her free time, Rosemary loves musical theater.

“It’s very possible that Rosemary may need to have more specialized care in her future, and we are so reassured knowing that Boston Children's will be there,” says Kate.

Family Advocacy Day

Elevating patient stories and educating lawmakers remains critical to increase awareness about the essential care provided by children's hospitals.