With the assistance of the Help Fill A Dream Foundation, a Nanaimo boy and his family are embarking on a dream trip to the Windy City.
Jonathan Dean, 7, his family and two nurses, are headed to the 12th annual Charge Syndrome Conference in Chicago between July 30 and Aug. 2.
According to his mother, Grace, Jonathan was born with Charge Syndrome, caused by a genetic disorder.
“It’s multiple, congenital anomalies at birth,” said Grace Dean. “It was a mutation of a gene and a lot of children present differently, but they’re all very complex. [Jonathan] is deaf and blind. He has some vision, that we’re able to use sign language, and he has a tracheostomy, and he’s tube fed.”
The trip will be beneficial in many ways, according to Dean.
“He gets a chance to meet his peeps, kids just like him, and I get to meet other parents and network and the nurses get to attend a professional day. There’s amazing workshops on all different challenges, there’s medical, developmental, communication, behaviours and all the things we get presented with,” she said.
One nurse will attend a workshop on school challenges, while the other will go to workshops pertaining to the home. Dean will attend workshops that help her in different areas and Jonathan’s brother Joshua, 11, will be at a camp where he can talk about being a sibling of someone with Charge.
Dean said Jonathan is a very content person, who likes going with the flow.
“This is a kid that never cries. He’s always happy, content, he’s an explorer. He likes new situations. He doesn’t get scared or freaked out. He loves to explore and check out as much as he can,” said Dean.
She said her son has a good sense of humour and recently, he’s improved his communication as well.
“He’s had a lot of receptive, where he understands signs … but he’s now just starting to express and tell us what he wants, so he’s got two-word sentences now, so we’re very excited,” she said.
Help Fill A Dream Foundation was glad to help Jonathan with his dream trip to Chicago.
“Dreams have a ripple effect that reach well beyond the family and into the entire community,” said Craig Smith, Help Fill A Dream executive director, in a press release.