MEDICINE HAT, AB — Today is Angelman Syndrome Awareness day. This is a rare disease that effects one in every 12,000-20,000 people.
Bruce Mckay, a local Kindergarten student, is one of the few that live with this syndrome.
Angelman syndrome effects Bruce’s nervous system. He can’t walk or talk and he experiences seizures.
“His disabilities are a put of him,” says Bruce’s mother Carly Mckay.
The disabilities though, are what makes Bruce such a special kid for Carly. One side-effect of Angelman Syndrome is a boost in energy, so Bruce always has a smile on his face.
The fact that Bruce carries a smile throughout his day is what has taught Carly to appreciate more in life.
“Bruce’s compassion and his unconditional love, and people we’ve met through him have taught me to look at the beauty and the good around. When really a lot of the times we focus on criticizing and the negatives,” said Carly.
Bruce was adopted when he was nine months old. Carly adopted Bruce knowing of his genetic disorder.
“With the first pictures that biological mom sent us we kind of fell in love,” said Carly.
Carly also runs a dayhome, meaning that Bruce is now taking a wheelchair-accessible taxi to school and back. Carly says it takes a community to raise a disabled child. Along with the taxi-drivers, Bruce receives support from the kids in Carly’s dayhome.
When Carly was considering buying a wheelchair-accessible van she says the kids told her not to worry about it.
“Bruce is gonna walk you know,” is what Carly was hearing from the kids.
70 per cent of people with Angelman Syndrome do learn how to walk.
As Bruce has started to crawl at the age of five, you’d be hard-pressed to find any doubters of Bruce.
As Bruce learns to walk, Carly’s dayhome kids are learning how to treat those with a disability.
“Even though Bruce is different, he’s still Bruce. And if somebody asks ‘What’s wrong with Bruce?’ Some of my kids will say it’s just Bruce.”
When Bruce is away from home, he’s often in class. At school he has an assistant that helps him during the day. His learning is a little different from the other kids. Right now, Bruce is learning how to stand up on his own.
Bruce also uses a device to tell people what he wants. When Bruce points to a picture, it will say what he wants.
His teachers aren’t the only one’s teaching in the class. Bruce gives lessons to those who are teaching him as well.
“I’ve learned to take every day as a new day and be happy with whatever it is that you get. So he’ll come in and I’ll be having a bad day but his smile just completely changes my day around.” said Bruce’s learning assistant Taylor Schaap.
And for his classmates, Bruce’s teacher says they’re learning lessons that can only be taught outside of the classroom.
“They’re actually learning to be excellent little caregivers with him. Helping out in the classroom, being that special little friend.”
