St. Augustine embraces boy with rare craniofacial syndrome June 21, 2023 – Posted in: Pfeiffer Syndrome – Tags: Florida School for the Deaf & the Blind, Jacksonville, Lisa Feller, Pfeiffer syndrome, rare craniofacial syndrome, St. Augustine

Community’s “angels” have been great comfort.

Matt Soergel _ Jacksonville.com September 27th, 2010

ST. AUGUSTINE – William Thompson can’t eat much solid food, but he loves going to the Applebee’s near his house. They fuss over him there, and he likes being fussed over.

Sure enough – the fussing commences no sooner than he gets through the door. Waitresses and managers crowd around him, noting his new wheelchair, commenting on his new Batman hat.

A customer speaks up. “How’s William doing today?” says Robert MacNeil. A while ago, he organized a motorcycle rally of veterans to raise money for William.

Then a woman walks by and recognizes William. She asks MacNeil, in a lowered voice. “Haven’t I read about him in the paper?”

MacNeil says yes, that’s true. The St. Augustine Record has written numerous updates on the boy. William, who turned 6 on July 5, has become something of a celebrity in a city that’s embraced the boy, who has an extremely rare craniofacial disorder called Pfeiffer syndrome that’s left his skull unable to grow as he does.

Lisa Feller, his mother, has what she calls her “angel list” – a couple of hundred people in St. Augustine who have helped out the family. She runs into her angels everywhere, she says.

“When I go out I have no name; I’m William’s mother. And if he’s not with me, everyone wants to know: ‘Where’s the little guy?’ “

Feller moved with William and his father, Bill Thompson, from the Tampa area to St. Augustine in hopes their son could attend the Florida School for the Deaf & the Blind. His handicaps were too profound, though, and he is now in an exceptional education class at Webster Elementary.

William has been fighting all his life, from his first second out of the womb.

He was not breathing when he was born. His head was pointed at the top – like a cone, his mother says – and absolutely flat in the back. His eyes bulged out of their sockets.

Feller is matter-of-fact about it. “When he was born, it was very difficult to look at him,” she said.

Pfeiffer syndrome is a rare disorder in which the skull is fused during development in the womb, leaving the brain with no place to grow. When he was an infant, his brain squeezed through soft skull tissue; X-rays showed a skull riddled with holes, like Swiss cheese.

He had his first major surgery when he was 8 days old. He’s had about 50 operations in all, including one in which he lost almost all his sight.

About twice a year, until he stops growing, around 21, he’ll have to have his skull cut open and reshaped, to relieve the pressure inside his head. Feller marvels at the skill and fearlessness of the doctors in Texas who operate on him, doctors who have kept him alive and made him look so much better.

Pfeiffer syndrome affects about one in 100,000 people, but William’s more severe form of the disorder – type 2, it’s called – is known to exist in only about 30 people worldwide.

Feller said some curious children have told her that William looks different; a few have even called him a “monster.”

She is not offended. They just don’t know William yet, she says. “I just want to say, come up to William, and you’ll fall in love with him. And they do.”

Feller isn’t sure what William’s mental ability is. But surgeries that have relieved the pressure in his head have helped. So now, when she asks him to point to his ears, he does. His mouth, his belly and his toes, too.

He can say, “No way Jose.”

He’s learned how to do a raspberry, a loud and defined “pfffftttt.”

He calls her “gaga,” and his father “Bill.”

“He called me gaga when he turned 5 and I cried for a day,” Feller said. “For so long, we didn’t have a name.”

He weighs 58 pounds now, and though he is practically blind, he can get around the house with a walker.

“It’s an adventure, a lot of ups and downs,” said his father. “A lot of ups.”

William is on Medicaid, but costs are crushing. Bill Thompson cuts lawns and works on cars. Feller says she is on disability after several health problems of her own, including cancer.

“We really count on the kindness of people,” she said.

People such as Sandy and Dick Glessner, who met Feller and William in a CVS store. They were behind them in line when the cashier told Feller that diapers were on sale.

On the spot, the Glessners, retired college professors from Massachusetts, offered to buy the rest of the on-sale stock for them.

Now they’re frequent guests at William’s house, and sometimes take along Nicole and Victoria, their 11-year-old twin granddaughters, students in Jacksonville.

The girls went to William’s recent birthday party at the carousel in St. Augustine.

“He inspires me,” Victoria said.

“He’s like a normal human being, and nobody should treat him in a way different from anybody else,” Nicole said.

Life is hard for William, Feller readily acknowledges. He breathes with the aid of a tracheotomy, and sleeps hooked to machines that aid and monitor his breathing.

And imagine, she said, having 50 operations in six years – that would leave anyone traumatized.

But she said William remains upbeat; he loves to hug and kiss, and he loves to follow colorful cartoons on the TV in his brightly painted bedroom. “SpongeBob SquarePants” is a particular favorite. “Shrek” and “Cars,” too.

When William was born, doctors didn’t expect him to live. Feller said she’s now told that he could grow up and even have children of his own. Complications from frequent surgeries, though, do pose a regular risk to William.

So after his birth, Feller started taking photos, to have something to remember him by. She’s kept it up for six years.

“Now I have two closets of scrapbooks,” she said. “The kid’s not going anywhere.”

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