Teen with Pfeiffer Syndrome and his mom bring Christmas surprise to families. December 22, 2021 – Posted in: Christmas, Lifestyle, Pfeiffer Syndrome – Tags: chronic, Community Hospice and Palliative Care organization, complex, extremely rare craniofacial disorder, life-limiting or advanced illnesses, Lisa Feller, North Central Florida, PedsCare, Pfeiffer syndrome, William Thompson

After years of receiving care from a local organization, William Thompson and his mother decided to give back.

The 17-year-old has lived with Pfeiffer syndrome since he was born. It’s an extremely rare craniofacial disorder that prevented his skull from growing with the rest of his body.

The disorder caused his skull to fuse during development in the womb, leaving his brain with no place to grow. When Thompson was an infant, his brain squeezed through soft skull tissue; X-rays showed a skull riddled with holes.

Good news:Woman who grew up on the St. Augustine lighthouse grounds returns for 90th birthday

Growth and development:St. Johns County Commission approves SilverLeaf expansion

He has gone through many surgeries because of his condition. He is blind, has speech difficulties and moves with the help of a wheelchair. But with the help of family, friends and professionals through Community PedsCare, he has grown into a joyful teen.

“He is just a sweet soul,” said Danielle Eaves, child life specialist with Community PedsCare. “And he is so much fun. I’ve had the pleasure of watching him overcome so many different obstacles and accomplish all these milestones that he was told he never would.”

The program has provided support to Thompson and his family, including a chaplain and visits from Eaves. She provides Thompson with both psychological and social support. Among other things, she helps him participate in recreational activities, she said.

Thompson helped his mother, Lisa Feller, create about 100 Christmas arrangements for Community Hospice and Palliative Care to show their appreciation for the care he received over the years, and to brighten the holidays for other families.

Attached to each wreath and centerpiece was a note with a photo and message from Thompson.

“We wanted to give back after all these years because he’s been with PedsCare since 2006,” Feller said. “And Danielle, who you know, she comes out, and we call it play therapy. And they have done so many nice things together. They’ve planted flowers. They’ve painted rocks. It’s such a great program.”

Feller encouraged people to donate to the program.

Feller and Eaves were at Thompson’s side during a visit this month to the Stephen R. Chapman Family Community Campus of Community Hospice & Palliative Care in St. Augustine. Thompson and his parents delivered the items to the campus along with friends and program officials. The visit was intended not only to provide the arrangements, but also to celebrate Thompson’s efforts.

“Merry Christmas,” Thompson said.

―  Matt Soergel of The Florida Times-Union contributed to this report.