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

Rob Kernachan editorial cartoon.
Editorial cartoonist focuses on Orange Shirt Day

Orange Shirt Day is the feature of Rob Kernachan’s contribution this week.… Continue reading

The grads of 2021 at Chemainus Secondary School will be resilient based on their experiences through COVID. (Photo by Don Bodger)
Making the most of grad events

Class of 2021 will carry resilience with them throughout their years based on COVID experience

COVID-19 has made the 2020-21 school year at Chemainus Secondary School interesting and challenging for graduates. (File photo by Don Bodger)
Chemainus Secondary School 2021 graduates

Here’s the young men and women who are embarking on life’s next journey

Girls just wanna have fun. From left: Danielle Dela Cruz, Melanie Cheng, Hanna Starkie, Camille Storteboom, Rebecca Rhode, Sian Diewert and Brianne Pamminger at the Crofton seawalk. (Photo by Alana Starkie)
Prom night brings some semblance of normalcy for 2021 Chemainus grads

Being together at least provides class members with some comfort

Tom Millard served his community well for so many years with the Chemainus Fire Department. (Photo submitted)
Millard dedicated himself to community service

Long-time Chemainus Fire Department member and chief remembered for his commitment

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 Co-op gas station at Whiskey Creek is burning after a camper van exploded while refueling just before 4 p.m. on Thursday, June 17, 2021. (FACEBOOK PHOTO)
Exploding camper van torches Highway 4 gas station between Qualicum Beach and Port Alberni

Highway traffic blocked after Whiskey Creek gas station erupts into flames

Helen Austin performing with Trent Freeman at the 2018 Vancouver Island MusicFest. Austin is one of the many performers listed for the 2021 event.
Vancouver Island MusicFest goes virtual for 2021

Black Press to stream 25 hours of programming July 9-11

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Greater father involvement in the home leads to improved childhood development and increased marital satisfaction, says expert. (Black Press Media file photo)
Vancouver Island researcher finds lack of father involvement a drag on gender equality

Working women still taking on most child and household duties in Canada: UVic professor

FILE – A science class at L.A. Matheson Secondary in Surrey, B.C. on March 12, 2021. (Lauren Collins/Surrey Now Leader)
Teachers’ union wants more COVID transmission data as B.C. prepares for back-to-school

BCTF says that details will be important as province works on plan for September

Provincial health officer Dr. Bonnie Henry outlines B.C.’s COVID-19 restart plan, May 25, 2021, including larger gatherings and a possible easing of mandatory masks on July 1. (B.C. government photo)
B.C. records 120 new COVID-19 cases, second vaccines accelerating

Lower Pfizer deliveries for early July, Moderna shipments up

A Heffley Creek peacock caught not one - but two - lifts on a logging truck this month. (Photo submitted)
Heffley Creek-area peacock hops logging trucks in search of love

Peacock hitched two lifts in the past month

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

Most Read