Just like any 10-year-old boy, Joey likes playing Donkey Kong on his Nintendo DS, watching episodes of The Simpsons, listening to country music and riding his bike. But unlike most 10-year-olds, Joey has Di George syndrome. He spent most of his early years in the hospital. At three months old, he was undergoing his first surgery to repair a hole in his heart.
Kathleen Bennett, a former maternity nurse at Royal Columbian Hospital, adopted Joey when he was only three weeks old. Even when she was told he had Di George syndrome and a geneticist cautioned her not to go through with the adoption, she said the decision was one she would do again in a heartbeat.
“I wouldn’t change a thing,” Bennett said. “I’ve always said if his birth mother had ever gotten pregnant again, I was going to take that child too.”
Bennett didn’t know much about Di George syndrome when she adopted Joey, but since that day she’s learned a lot. The syndrome can often cause up to 180 other health ailments, including heart defects, poor immune system function, a clef palate and behavioural disorders.
“He’s been in and out of hospital most of his younger life, up until he was about five. He’s had heart surgery, he has a left-sided weakness because they think he might have had a stroke, he has seizures, he has issues,” Bennett said.
But despite the medical problems and occasional visits to the hospital, Joey and Bennett live a happy life in their Forest Grove townhouse complex.“He’s a bright child who, at the age of one year old, figured out how to move boxes so he could climb up on the table and take down all the DVDs,” Bennett said.
Joey is now in Grade 5 at Forest Grove Elementary School. He has an education assistant who helps him with his speech and schoolwork, and he is doing better than others with Di George syndrome, Bennett said.
She was initially told he would never walk, talk or even eat on his own, but he can do all those things and more, she added.
Last year, Joey added another accomplishment to his ever-growing list – he learned to ride a bike.
Bennett had always been aware of the work Variety – the Children’s Charity does for special needs children in the community, but she’d never considered reaching out to them for help.
She was doing some research last year on specially made bikes for children with special needs and mentioned it to Joey’s physical therapist. The physical therapist suggested she contact Variety to see if they would pay for the bike.
“And they approved it,” Bennett said.
On the day the tricycle was delivered, Joey’s education assistant called Bennett around lunchtime and told her she had to come to the school right away.
“I drove over and I ran around back … and there she is standing with him, and Joey is going. He’s riding his bike by himself,” Bennett said. “I had tears in my eyes.”
Bennett never thought Joey would learn to ride the bike so fast, she thought it would be a process, but he proved them all wrong. Not only has the tricycle given him some freedom, it’s also helped to strengthen his left side and enables him to keep up with classmates when they’re out running around the school.
“This gave Joey freedom. In the summertime, he can ride his bike with his friends,” Bennett said. “It gives him a little bit of independence.”
This weekend is the annual Variety Show of Hearts Telethon on Global TV. All weekend people can call 310-KIDS (5437) or visit www.variety.bc.ca to make a donation to the Variety – Children’s Charity.
“By donating, that helps the families that really need the help. I’m so grateful to them for being able to get Joey’s bicycle,” Bennett said. “People should be donating because they would bring a smile to a child’s face.”
