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

COVID-19. (Image courtesy CDC)
Interior Health reports 18 COVID-19 cases, highest daily count since July

The total of COVID-19 cases in the region is now at 662

A Kelowna clinic decided to immunize their patients in a drive-thru flu clinic earlier this month. (Twila Amato - Black Press Media)
Interior Health anticipates increase in flu vaccinations this season

Some 300,000 doses of flu vaccine ready for distribution across Southern Interior

Your Columbia River Revelstoke candidates; Nicole Cherlet (NDP); Samson Boyer (Green) and Doug Clovechok (BC Liberal)
Candidates’ messages: Columbia River Revelstoke

The Bulletin offered each candidate in Columbia River Revelstoke space to hold forth on issues important to them and to voters.

COVID-19. (Courtesy of CDC).
Interior Health reports 12 additional COVID-19 cases

The total number of cases in the region is now at 644

Carmen Hintz poses with the four kittens she rescued. Paul Rodgers photo.
WATCH: Kimberley local rescues four kittens, starts fund to help others

Kimberley local Carmen Hintz has found her house to be a little… Continue reading

B.C. provincial health officer Dr. Bonnie Henry gives a daily briefing on COVID-19 cases at an almost empty B.C. Legislature press theatre in Victoria, B.C., on March 25, 2020. (Don Craig/B.C. government)
B.C. sees 223 new COVID-19 cases, now 2,009 active

Two new care home outbreaks in Surrey, Burnaby

BC Liberals Leader Andrew Wilkinson, BC Greens Sonia Furstenau, BC NDP John Horgan (The Canadian Press photos)
British Columbians vote in snap election called during COVID-19 pandemic

At dissolution, the NDP and Liberals were tied with 41 seats in the legislature, while the Greens held two seats

100 Mile Conservation officer Joel Kline gingerly holds an injured but very much alive bald eagle after extracting him from a motorist’s minivan. (Photo submitted)
B.C. driver thought he retrieved a dead bald eagle – until it came to life in his backseat

The driver believed the bird to be dead and not unconscious as it turned out to be

Chastity Davis-Alphonse took the time to vote on Oct. 21. B.C’s general Election Day is Saturday, Oct. 24. (Chastity Davis-Alphonse Facebook photo)
B.C. reconciliation advocate encourages Indigenous women to vote in provincial election

Through the power of voice and education Chastity Davis-Alphonse is hopeful for change

Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

White Rock RCMP Staff Sgt. Kale Pauls has released a report on mental health and policing in the city. (File photos)
White Rock’s top cop wants to bill local health authority for lengthy mental-health calls

‘Suggestion’ included in nine-page review calling for ‘robust’ support for healthcare-led response

A Le Chateau retail store is shown in Montreal on Wednesday July 13, 2016. Le Chateau Inc. says it is seeking court protection from creditors under the Companies’ Creditors Arrangement Act to allow it to liquidate its assets and wind down its operations.THE CANADIAN PRESS/Ryan Remiorz
Clothing retailer Le Chateau plans to close its doors, files for CCAA protection

Le Chateau said it intends to remain fully operational as it liquidates its 123 stores

Green party Leader Sonia Furstenau arrives to announce her party’s election platform in New Westminster, B.C., on October 14, 2020. THE CANADIAN PRESS/Jonathan Hayward
B.C. Green party says it’s raised nearly $835,000 in 38 days

NDP Leader John Horgan is holding his final virtual campaign event

Most Read