Porter Stanley takes part in the parachute game at preschool in Onoway, Alta., on Wednesday, November 7, 2018. THE CANADIAN PRESS/Jason Franson

Porter Stanley takes part in the parachute game at preschool in Onoway, Alta., on Wednesday, November 7, 2018. THE CANADIAN PRESS/Jason Franson

‘Are we going to play?’ Alberta boy with rare illness no big deal for classmates

Porter Stanley is one of 30 people in the world to be diagnosed with Beare-Stevenson syndrome, a craniofacial disorder.

Four-year-old Porter Stanley has some new pals at preschool.

Russ stands beside him as they manoeuvre toy cars down and around a plastic parking garage. The newest kid in class, Mimi, offers her hand, patiently waiting for Porter to give her a high- five.

They soon sit on a large carpet for circle time and belt out songs about a bumblebee, the weather and monkeys.

Porter isn’t able to sing or speak, but claps his hands together with the help of an aide. His mouth turns up into a quick smile as a portable suction machine buzzes in the background.

Porter is one of about 30 people ever in the world to have a reported diagnosis of Beare-Stevenson syndrome, a condition that caused the bone plates in his skull to fuse together before he was born.

Doctors told his parents he would probably only live a few months. But after 10 surgeries and two years of medical ups and downs, Porter is doing well. He’s a big brother, an Edmonton Oilers hockey fan and loves watching “Paw Patrol.”

And now he’s going to preschool.

“It’s just opened up an entire world for him that he loves and he was missing out on,” his mother, Corine Stanley, explains after dropping Porter off with his new astronaut backpack at preschool in Onoway, a small town northwest of Edmonton.

She says that when Porter started in the fall, she wondered how best to introduce him to his class.

Porter’s head and face are misshapen. He uses a walker to get around. There’s a tracheotomy hole in his throat that helps him breathe, but leaves him only able to communicate by touching pictures on a computer tablet.

His classmates watched a video about how Porter’s suction machine is used to clear his airway. And they listened to their teacher read a book about being different.

In the end, Stanley says, Porter starting school was as normal as it could be.

“He rolled in the first day and the kids were like, ‘OK, no big deal … Are we going to play or what’s going on here?’

“They treat him like any other little boy. Because he is.”

Instructor Vivian McDonald says Porter has the most medical challenges of any student. But his classmates have figured out that they have much in common.

“It really shows that everyone can fit into the world and that we can respect our differences.”

Porter’s pediatrician, Dr. Rehana Chatur, says she’s amazed by his progress.

“If you were to ask any of us initially when Porter was born if he would be walking and in preschool, I don’t think any of us would have predicted that,” she says.

At the Stollery Children’s Hospital in Edmonton, where Porter has been featured in an ad campaign, Chatur regularly sees posters of his face and hears people talking about his appearance. She calls him a great ambassador.

Chatur explains that the soft spot on top of a baby’s head allows room for the brain to grow and usually closes up by 14 months of age. In Porter’s case, parts of his skull had to be taken apart and pieced back together and shunts were also used to relieve pressure as his brain developed.

Because of the way his skull was fused, parts of the brain that control balance and breathing still fit tightly at the base of his skull, causing his developmental delays.

Porter was Chatur’s first Beare-Stevenson patient. And remarkably, considering the small number of cases in the world, she now has a second patient with the diagnosis. Chatur says she can’t reveal details other than the patient is a little girl.

Most children with Beare-Stevenson live only a few months or until about age two, says Chatur. The oldest recorded patient with the syndrome was 13.

The plan is for Porter to start kindergarten next year, says his mother. And because his hometown is small, he’ll continue on with the same group of friends.

Socialization is important for his development and self-esteem, adds Chatur.

And, in the end, Porter may be the one who is the teacher.

“It’s important for kids to learn things like tolerance and patience and how to be inclusive,” Chatur says.

“I think he’s teaching a lot of people, both kids and adults.”

Chris Purdy, The Canadian Press

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

The public will start to weigh in next month on the possible future uses of Oak Bay Lodge. In the meantime, a request to the province by the City of Victoria to intervene and allow use of at least a portion of the closed facility as temporary shelter space awaits an answer. (Black Press Media file photo)
Oak Bay Lodge redevelopment planning continues, request for temporary use awaits answer

Public consultation on future of CRD-owned site begins next month

A project on McCallum Road will add 227 residential units to Langford. (Photo courtesy of Highstreet Ventures)
Residential project slated for McCallum Road in Langford

Six-storey development will be built to highest energy-efficiency standards

Saanich golfer and top B.C. junior and juvenile player Willy Bishop was named to the 2021 Canadian National Junior Golf Squad on Nov. 19. (Photo courtesy Jenny Bishop)
Saanich student to tee-off with national golf team

Willy Bishop, 16, named to Canadian National Junior Golf Squad in 2021

Island Health has reported a COVID-19 outbreak at Saanich Peninsula Hospital. (Arnold Lim/Black Press)
Four new COVID-19 cases added to Saanich Peninsula Hospital outbreak

Inital round of patient testing is complete, staff testing continues

Motorists wait to enter a Fraser Health COVID-19 testing facility, in Surrey, B.C., on Monday, Nov. 9, 2020. THE CANADIAN PRESS/Darryl Dyck
Another 694 diagnosed with COVID-19 in B.C. Thursday

Three more health care outbreaks, 12 deaths

(AP Photo/Paula Bronstein)
POLL: Has COVID-19 changed your plans for the holidays?

The lights are going up, the stacks of presents under the tree… Continue reading

Anyone with information on any of these individuals is asked to call 1-800-222-TIPS (8477) or visit the website victoriacrimestoppers.ca for more information.
Greater Victoria Crime Stoppers wanted list for the week of Dec. 1

Greater Victoria Crime Stoppers is seeking the public’s help in locating the… Continue reading

Watch Messiah at home with the Sooke Philharmonic

Concert available to stream Dec. 12

Emergency crews used a backhoe loader to clear fire debris from the scene of a fire on Wesley Street Thursday as police and firefighters gathered up propane tanks, stoves and fireplaces used by camp residents to heat tents. (Chris Bush/News Bulletin)
City of Nanaimo dismantles downtown homeless encampment after fire

Four to six tents burned up in Wesley Street fire Thursday, Dec. 3

A demonstrator wears representations of sea lice outside the Fisheries and Oceans Canada offices in downtown Vancouver Sept. 24, demanding more action on the Cohen Commission recommendations to protect wild Fraser River sockeye. (Quinn Bender photo)
First Nations renew call to revoke salmon farm licences

Leadership council implores use of precautionary principle in Discovery Islands

Ten-month-old Aidan Deschamps poses for a photo with his parents Amanda Sully and Adam Deschamps in this undated handout photo. Ten-month-old Aidan Deschamps was the first baby in Canada to be diagnosed with spinal muscular atrophy through Ontario’s newborn screening program. The test was added to the program six days before he was born. THE CANADIAN PRESS/HO, Children’s Hospital Eastern Ontario *MANDATORY CREDIT*
First newborn tested for spinal muscular atrophy in Canada hits new milestones

‘If Aidan had been born any earlier or anywhere else our story would be quite different’

BC Ambulance Services reassures people that the service is well staffed and ready to respond. Photo by Don Bodger
BC Ambulance assures the Island community they’re ‘fully staffed’

‘Paramedics are not limited to a geographical area.’ — BCEHS

(Pixabay)
Canadians’ mental health has deteriorated with the second wave, study finds

Increased substance use one of the ways people are coping

Most Read