Rylie Rollins and art teacher Leslie Greenetz show off paintings they created together ahead of an upcoming art gala to help raise funds for Rylie’s intensive therapy in Florida. Photo courtesy of Leslie Greenetz

YUBA CITY, CA (MPG) - One in a million. That’s one way to describe 10-year-old Rylie Rollins, who was born with a rare craniofacial condition that has resulted in 29 surgeries during her first decade of life.

Rylie has Type 2 Pfeiffer syndrome, a genetic form of craniosynostosis in which bones of the skull fuse too early, restricting space for the growing brain and affecting development of the face, airways and other bones. Type 2 is among the syndrome’s most severe forms and is marked by a “cloverleaf skull,” caused when multiple skull sutures fuse prematurely.

In Rylie’s case, her father, Ronnie Rollins, said all of the sutures in her skull had fused. The family was told to prepare for the possibility of significant cognitive impairment. But just three days after she was born, a Sacramento neurosurgeon chose to operate.

“Basically he removed her whole cranium, the whole top of her skull,” Rollins said. “He just told us, ‘I believe this is the only chance that your baby’s brain has of being healthy,’ so of course we said yes.”

Rylie Rollins works on balance and mobility with therapist Jennifer “Jenny” Mazurkiewicz during an intensive therapy session in Florida. Photo courtesy of Kate Rollins

The family later learned just how unusual such a major operation was on a newborn.

“They don’t ever do cranial surgeries like that until babies are at least 6 to 9 months old because of the risk of blood loss, and they’re just so fragile,” Rollins said.

When he later asked the surgeon why he operated so early, Rollins recalled his response: “I couldn’t imagine leaving her like that. There was no chance that her brain was going to be healthy. ... To me, that was the only option.”

Today, Rollins said Rylie consistently scores at or above age level on cognitive testing.

“She’s smart as a whip,” he said. “She has an amazing personality and an amazing attitude.”

The physical effects of her condition, however, continue to present challenges. Rylie has undergone major procedures involving her skull, spine and hips and lives with fused elbows, an underdeveloped midface and significant motor delays in her legs. She can walk with assistance but has not yet reached the goal of walking independently.

That goal is helping drive the family’s planned return to Florida this fall for another three-week therapy intensive with Jennifer Mazurkiewicz, a pediatric occupational therapist and owner of Reimagine OT in Pinellas County. The practice uses high-intensity therapy centered on neurodevelopmental treatment and neurological re-education to promote functional independence.

The Rollins family first discovered Mazurkiewicz’s work online and arranged a consultation while in Florida for a promised trip to Disney World following one of Rylie’s surgeries.

“We could tell right away Rylie really connected with her,” Rollins said. “We knew that her methods and everything were going to be a really great fit.”

Rylie has since completed two three-week intensives, including one earlier this year. Her sessions run three hours a day, five days a week, and incorporate neurological stimulation and work on balance, body awareness and movement.

“Some people ask us why we travel so far for this, but we know for Rylie it’s worth it,” Rollins said. “If there’s not that connection there with the therapist, and if the child doesn’t really trust them and doesn’t really feel comfortable with them, you often don’t really achieve anything.”

The three-week intensive costs approximately $6,000 and is not covered by the family’s insurance. The family has been able to eliminate lodging costs thanks to a chance encounter during an earlier Florida trip. A woman who noticed Rylie’s beach wheelchair struck up a conversation with the family and, after learning why they traveled to Florida, offered them the use of her family’s condo during future therapy visits.

“They let us stay there for free, which is amazing,” Rollins said. “So we don’t have to worry about that part of the expense, but we are trying to pay for the actual travel and therapy.”

Rylie Rollins enjoys time on the beach with her family during a trip to Florida. Photo courtesy of Kate Rollins

Now, Rylie is helping raise that money herself, with a paintbrush. An Art Gala benefiting Rylie will be held from 5 to 7 p.m. Sunday, Sept. 13, at Full Circle Coffee in Yuba City. Guests can browse and purchase Rylie’s original artwork while enjoying hors d’oeuvres, desserts and coffee. Proceeds will support her therapy in Florida this fall.

Local muralist and art teacher Leslie Greenetz has worked with Rylie for several years. The two often paint side-by-side, with Greenetz demonstrating a piece and Rylie creating her own interpretation.

“She has her own beautiful style,” Greenetz said. Because Rylie’s elbows do not bend, Greenetz said her paintings take on “a unique roundness” that has become part of her artistic style.

“She is so visibly happy when she’s painting,” Greenetz said. “She has her own ideas, and they’re excellent ideas. She’s a very good little artist and has a good sense of design and color.”

One of Rylie’s largest future procedures will be a midface advancement surgery intended to address the underdevelopment of the middle portion of her face and open her upper airway. If successful, Rollins said, it could eventually allow doctors to remove her tracheostomy and make it easier for her to breathe, eat by mouth and speak more clearly.

For now, the family is focused on returning to Florida and continuing to build Rylie’s strength, mobility and independence. Artwork can be purchased during the Sept. 13 gala. Donations can also be made through Venmo at @KATIE-ROLLINS1.