Ambassador Highlight: Ella Grace

Ella Grace Ramondetta was nearly 3 years old, about to celebrate her birthday, when her family first noticed something was wrong. She had developed a limp, quickly prompting a visit to an orthopedic specialist. It was at that appointment in June 2018 that she and her family’s lives would change forever.

During that visit, doctors discovered a lesion on her tibia, leading to an immediate admission to Wolfson Children’s Hospital in Jacksonville, where Ella Grace was diagnosed with an osteoid osteoma. Nearly a month later, she underwent surgery, but the procedure was unsuccessful.

Following the procedure, the Ramondetta family began a multi-year journey across the country in search of answers.

“Having been on a journey for four years, we finally landed at one of the top specialists in the country, located in Iowa City, Iowa,” said Emily, Ella Grace’s mother.

It was in the office of Dr. Polly Ferguson where they were given a clear diagnosis for the first time: Ella Grace was affected by Chronic Recurrent Multifocal Osteomyelitis (CRMO), a disease that causes pain and damage in bones due to inflammation.

Iowa City was far from home for the Ramondettas who live in Florida. Dr. Ferguson recommended them to the pediatric rheumatology group at UF Health Shands Children’s Hospital, where the family met Dr. Renee Modica. Ella Grace now receives home injections, oral medications and inpatient infusions every three months.

“It has been a long journey to find the right doctors, ascertain the current diagnosis and finally begin treatment,” Ramondetta said. “There have been lots of ups and downs and we are grateful to be at a place where we can receive treatment for Ella Grace.”

Since her admission to UF Health Shands Children’s Hospital in January 2023, Ella Grace has been an inpatient six times, with her most recent admission in April 2024.

“For the first time, we are hearing words like ‘improving’ and ‘stable,’ and we know it’s because of the fabulous doctors, nurses and staff here at UF Health Shands Children’s Hospital,” Ramondetta said.

The Ramondettas are so appreciative of the care they’ve received that they spoke at the groundbreaking ceremony for the renovations of Units 44 and 45 at UF Health Shands Children’s Hospital.

Once complete, patients and families will have private rooms, including brand-new sleeper sofas and TVs, while incorporating essential modifications to care services.

“When we heard about these renovations, we were so excited,” Ramondetta said. “For every room to be private is a wonderful thing and will give parents such peace of mind. Thousands of families will walk through these doors each year and I guarantee you, no parent ever wants to be tucking their child in bed at night in the hospital, but for many of us this is our story. Knowing they are just as invested in the environment as you are means the world to us.”

More than $4 million in funds raised through Children’s Miracle Network Hospitals initiatives for UF Health Shands Children’s Hospital is set to support the renovations of Units 44 and 45. The effort is made possible by the CMN community, donors and supporters, and their commitments to providing the best care for our pediatric patients.

“To hear and see the passion you have to make the environment one where truly healing can take place means the world to us. This place has become our home away from home, and I know for thousands of others it has too. We know the renovations will help UF Shands Children’s Hospital continue to be where miracles happen. On behalf of our family and the thousands of others, thank you.”