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

Jacqueline Pearce and Jean-Pierre Antonio received the BC Historical Federation Best Article Award on Saturday for their story about translating haiku written in the Tashme internment camp.
Article chronicling haiku in Japanese internment camp near Hope wins award

Tashme Haiku Club’s work was preserved and recently translated, authors write

Kindergarten kids from Evans elementary school in Chilliwack painted rocks with orange hearts and delivered them to Sto:lo Elders Lodge recently after learning about residential schools. (Laura Bridge photo)
Kindergarten class paints rocks with orange hearts in Chilliwack for local elders

‘Compassion and empathy’ being shown by kids learning about residential schools

Chilliwack potter Cathy Terepocki (left) and Indigenous enhancement teachers Val Tosoff (striped top) and Christine Seymour (fuchsia coat), along with students at Vedder middle school, look at some of the 500-plus pinch pots on Thursday, June 10 made by the kids to honour the 215 children found at Kamloops Indian Residential School. (Jenna Hauck/ Chilliwack Progress)
Chilliwack students make hundreds of tiny clay pots in honour of 215 Indigenous children

‘I think the healing process has begun,’ says teacher about Vedder middle school project

Dennis Saulnier rescued his daughters, two-year-old Brinley (left) and four-year-old Keegan, after their truck was driven off the road and into Cultus Lake on May 16, 2020. Reporter Jenna Hauck has been recognized by the B.C. and Yukon Community Newspapers Association for her story on the rescue. (Jenna Hauck/ The Progress)
Chilliwack Progress, Hope Standard staff take home 7 Ma Murray awards

Jenna Hauck, Eric Welsh, Jessica Peters, Emelie Peacock all earn journalism industry recognition

(Unsplash.com)
Protecting our elders: It’s up to all of us to look out for them

World Elder Abuse Awareness Day (WEAAD) is June 15

Canadian Prime Minister Justin Trudeau participates in a plenary session at the G7 Summit in Carbis Bay, England on Friday June 11, 2021. THE CANADIAN PRESS/Adrian Wyld
Canada donating 13M surplus COVID-19 vaccine doses to poor countries

Trudeau says the government will pay for 87 million shots to be distributed to poor countries

Premier John Horgan speaks as provincial health officer Dr. Bonnie Henry, right, and health minister Adrian Dix look on during a press conference to update on the province’s fall pandemic preparedness plan during a press conference from the press theatre at Legislature in Victoria, Wednesday, Sept. 9, 2020. THE CANADIAN PRESS/Chad Hipolito
B.C. officials to provide details on Step 2 of COVID reopening plan Monday

Step 2 could allow for larger gatherings and a resumption of recreational travel

Indigenous Services Minister Marc Miller is seen during a news conference, Wednesday May 19, 2021 in Ottawa. THE CANADIAN PRESS/Adrian Wyld
Indigenous child-welfare battle heads to court despite calls for Ottawa to drop cases

Feds are poised to argue against two Canadian Human Rights Tribunal rulings

The Great Ogopogo Bathtub Race has been held in Summerland as a fundraising event. Do you know which Canadian city introduced this sport? (Black Press file photo)
QUIZ: A summer’s day at the water

How much do you know about boats, lakes and water?

Two-year-old Ivy McLeod laughs while playing with Lucky the puppy outside their Chilliwack home on Thursday, June 10, 2021. (Jenna Hauck/ Chilliwack Progress)
VIDEO: B.C. family finds ‘perfect’ puppy with limb difference for 2-year-old Ivy

Ivy has special bond with Lucky the puppy who was also born with limb difference

A million-dollar ticket was sold to an individual in Vernon from the Lotto Max draw Friday, June 11, 2021. (Photo courtesy of BCLC)
Lottery ticket worth $1 million sold in Vernon

One lucky individual holds one of 20 tickets worth $1 million from Friday’s Lotto Max draw

“65 years, I’ve carried the stories in my mind and live it every day,” says Jack Kruger. (Athena Bonneau)
‘Maybe this time they will listen’: Survivor shares stories from B.C. residential school

Jack Kruger, living in Syilx territory, wasn’t surprised by news of 215 children’s remains found on the grounds of the former Kamloops Indian Residential School

A logging truck carries its load down the Elaho Valley near in Squamish, B.C. in this file photo. THE CANADIAN PRESS/Chuck Stoody
Squamish Nation calls for old-growth logging moratorium in its territory

The nation says 44% of old-growth forests in its 6,900-square kilometre territory are protected while the rest remain at risk

Most Read