Boy with rare condition fits right in at Alberta preschool
After 10 surgeries, ‘it’s just opened up an entire world for him,’ mom says
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 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?’ ”
Instructor Vivian Mcdonald says Porter’s classmates have figured out that they have much in common.