The words and the thoughts are all in there for toddler Thompson Chadsey, though what used to be spoken words are more like grunts now.
Life is anything but easy for his Westbank family, who are the boy’s most active and passionate advocates. But seeing Thompson achieve what some health professionals once said would be impossible for him is its own kind of reward for the hard work, says his mother Alicia.
“When he was two weeks old, they said he’d never walk,” says Alicia of her son, born on Valentine’s Day 2014. “That was it for me. I put on my gloves and we’ve been boxing ever since.”
Alicia and Thompson are regulars at the Kelowna child development centre, Starbright, where Thompson receives speech therapy, physiotherapy, occupational therapy and more at least twice a week.
The boy now has much-improved physical development, says his mother, and is clearly intelligent. But suddenly he’s “not sending,” says Alicia. “He used to talk clear as day, but now he’s grunting. We don’t know what’s going on, but he’s regressing.”
Born after a high-risk pregnancy marked by Alicia’s near-constant nausea, Thompson looked to be a healthy newborn other than a missing toe on one foot and a cleft palate.
“But apparently something wrong with both ‘face and foot’ is a sign to check further,” says Alicia. “So they started checking, and they found out that his heart was backward, his bowel was backward, and one leg is shorter than the other. We were seeing the geneticists at B.C. Children’s Hospital when he was first born, but he spoke early, walked early, and we weren’t too concerned. But now, he has stopped talking.”
Thompson and his family are enrolled in BC Children’s new CAUSES clinic, which tests children for genetic disorders and features genetic counselling, interpreting of test results and treatment planning for families.
Alicia and Thompson are well-known fundraising fixtures in Westbank, where the family’s “Thompson’s Tabs” Facebook page is full of announcements of the latest donation of pop-can tabs to benefit the Portland Shriners Children’s Hospital. The family’s efforts have brought in almost 300 kilograms of pop tabs.
Alicia can’t say enough in praise of the Shriners, who she says have been an enormous support to the family ever since she first contacted the Shriners Hospital in Portland, Ore. for advice, which was shortly after her own doctors had told her that Thompson’s best hope was to have one of his legs amputated below the knee. The hospital urged her to hold off, and to bring Thompson down as soon as possible. He is now in a surgical process of gradual leg-lengthening, rebuilding and stabilizing, and will be for years to come.
“They’ve now done two surgeries on him, and the only thing we’ve paid for is the post-surgery pain medications,” says Alicia. “I think they’ve flown us down there 11 times, paid for our hotels and meals. We’ve had amazing support from the Shriners, and from Starbright. We’ve got more appointments than ever right now, and more coming. And through it all you have to somehow remember: Try to go to the park.”
The family knows the inside of many hospitals, but something about arriving at the one in Portland is “such a pleasure,” says Alicia. “I feel the same way when I walk into Starbright, where Thompson has a team of five people supporting him.”
“They’ve been good with me, helping me out and asking about whether I want to talk to a counsellor,” says Alicia. “They’re trying to help me find day care, preschool, respite care. They’ve done a lot to support us.”
Thompson is now being tested for possible social development delays, and will continue to be monitored by experts at Shriner’s hospital and BC Children’s. His family have seen the benefits for Thompson of finding out as much as possible about options and types of treatment.