Porter’s illness no biggie in class
Preschoolers embrace boy, 4, who has rare craniofacial disorder
ONOWAY, ALTA.— 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 children 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. The oldest child with it was 13.
Surgery has partly helped, but left him with delayed development.
Doctors told his parents he would probably live just 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 at preschool.
“It’s just opened up an entire world for him that he loves and he was missing out on,” his mother, Corine Stanley, says after dropping him off with his new astronaut backpack at preschool in Onoway, a small town northwest of Edmonton.
She says 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. There’s a tracheotomy hole in his throat to help 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,” his mom says.
Instructor Vivian McDonald says Porter has the most medical challenges of any student.
But she says his classmates have figured out that they also 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.
“When Porter was born ...,” she said, “I don’t think any of us would have predicted,” he would be walking and in preschool.
At the Stollery Children’s Hospital in Edmonton, Porter is featured in an ad campaign. Chatur calls him a great ambassador.
Porter was Chatur’s first Beare-Stevenson patient. And remarkably, considering the small number of cases, she now has a second patient, a little girl, with the same syndrome.
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.”