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

Just Posted

Stettler
Stettler and area’s ninth annual Eco Excellence Awards have been announced

This year’s recipients include Louise Damen, Joanne Pinder, Jan and Bob Richardson and the Jewel Theatre

Pictured here are Stettler-based band The Jazz Guys, who are launching this season’s Entertainment in the Park series at West Stettler Park on June 24th. photo submitted
Stettler’s The Jazz Guys to launch ‘Entertainment in the Park’ season June 23rd

This year’s festivities will consist of the following 10 free concerts

Alberta is now below 3,000 active cases of COVID-19, as the province reported 2,639 Wednesday. (NIAID-RML via AP)
Red Deer below 100 active COVID-19 cases for first time since March

69.7 per cent of Albertans 12 and over have at least one dose of the COVID-19 vaccine

Premier Jason Kenney says the provincial government is doing everything it can to encourage Albertans to get vaccinated. (Photo by Chris Schwarz/Government of Alberta)
Travel prizes added to Alberta’s vaccine lottery

More than 40 travel rewards available for those who are fully vaccinated

People line up to get their COVID-19 vaccine at a vaccination centre, Thursday, June 10, 2021 in Montreal. THE CANADIAN PRESS/Ryan Remiorz
Vaccines, low COVID case counts increase Father’s Day hope, but risk is still there

Expert says people will have to do their own risk calculus before popping in on Papa

The Calgary skyline is seen on Friday, Sept. 15, 2017. THE CANADIAN PRESS/Jeff McIntosh
2 deaths from COVID-19 Delta variant in Alberta, 1 patient was fully immunized

Kerry Williamson with Alberta Health Services says the patients likely acquired the virus in the hospital

A vial containing the Moderna COVID-19 vaccine is shown at a vaccination site in Marcq en Baroeul, outside Lille, northern France, Saturday, March 20, 2021. THE CANADIAN PRESS/AP/Michel Spingler
mRNA vaccines ‘preferred’ for all Canadians, including as 2nd dose after AstraZeneca: NACI

New recommendations prioritizes Pfizer, Moderna in almost all cases

House Majority Whip James Clyburn, D-S.C., center left, reaches over to Rep. Maxine Waters, D-Calif., joined by Speaker of the House Nancy Pelosi, D-Calif., center, and members of the Congressional Black Caucus as they celebrate the Juneteenth National Independence Day Act that creates a new federal holiday to commemorate June 19, 1865, when Union soldiers brought the news of freedom to enslaved Black people after the Civil War, at the Capitol in Washington, Thursday, June 17, 2021. It’s the first new federal holiday since Martin Luther King Jr. Day was created in 1983. (AP Photo/J. Scott Applewhite)
Biden to sign bill making Juneteenth a federal holiday

New American stat marks the nation’s end of slavery

A screenshot of the First Peoples Cultural Councils First Peoples’ Map. (First Peoples Cultural Council)
Online resource blends B.C.-Alberta’s Indigenous languages, art and culture

Advisor says initiative supports the urgent need to preserve Indigenous languages

A plane is silhouetted as it takes off from Vancouver International Airport in Richmond, B.C., May 13, 2019. THE CANADIAN PRESS/Jonathan Hayward
Report calls for airlines to refund passengers for flights halted due to COVID-19

Conclusion: federal help should be on the condition airlines immediately refund Canadian travellers

Green party Leader Annamie Paul speaks during a news conference on Parliament Hill in Ottawa on Tuesday, June 15, 2021. Paul has survived another day of party strife after a planned ouster shifted course, leaving her with a tenuous grip on power ahead of a likely federal election this year. THE CANADIAN PRESS/Justin Tang
Green Leader Annamie Paul blasts ‘racist,’ ‘sexist’ party execs who sought ouster

Fallout has continued, with two of the federal council’s members resigning

Russian President Vladimir Putin, left, and U.S President Joe Biden shake hands during their meeting at the ‘Villa la Grange’ in Geneva, Switzerland in Geneva, Switzerland, Wednesday, June 16, 2021. (AP Photo/Alexander Zemlianichenko, Pool)
Biden says meeting with Putin not a ‘kumbaya moment’

But U.S. president asserted Russian leader is interested in improved relations, averting a Cold War

Most Read