Hamilton baby struggles with mystery illness

In the Richards family home on East 23rd Street in Hamilton, remnants of one-year-old Brayden's birthday are everywhere.
The Richards family — dad Steve, sister Brianna, mom Katherine and one-year-old Brayden — are all hoping for a diagnosis for Brayden's mystery illness. Specialists have investigated numerous possibilities, but no answer has emerged. (Samantha Craggs/CBC)

In the Richards family home on East 23rd Street in Hamilton, remnants of one-year-old Brayden's birthday are everywhere.

It was four days earlier, but balloons reading "Happy 1st Birthday" still float quietly in the corner. Streamers still hang in the kitchen. There's leftover cake in the fridge, and empty fireworks shells sit at the side of the house.

Since birth, Brayden has suffered from an undiagnosed mystery illness that has stymied specialists. Doctors told his mother, Katherine, that he'd never reach his first birthday.

So when he reached it on Aug. 3, everyone celebrated.

"We've come this far," Katherine Richards said. "But I'm petrified of what the future holds."

Teams of doctors have examined the curious case of Brayden Richards, but to date, no one knows what's wrong with him.

From the time he was born, he has had no ability to gag, cough or swallow. He had hypertonia (increased muscle tension) from the waist down and hypotonia (reduced muscle strength) from the waist up. He had limited movement in his hands and feet, and he was so unresponsive that he didn't react to pain.

He spends his days lying on the couch with a tracheotomy and a suction machine. The machine rumbles through the night in the upper level of their two-bedroom house.

His lips have started to move a little more. His gaze flickers and often rests on his mom. His condition can go from bright to dire in an instant, which prevents him from traveling any farther than McMaster Children's Hospital.

'I can't just sit here and wait for advances in medicine.'—Katherine Richards

It's been a year of blood tests and MRIs, of specialists and ultrasounds and X-Rays. None has revealed the cause.

The only ailment they've ever revealed is delayed myelination, Richards said. But that doesn't explain all of her son's symptoms.

Doctors have speculated that it is a rare genetic illness, but tests have not revealed what it is, she said.

Richards maintains a Facebook page where she updates nearly 1,000 followers about Brayden's condition. She is telling her story in the hope that someone somewhere will recognize the symptoms and have some answers.

"I've had doctors tell me there's nothing more they can do," she said. "They're hoping with advances in medicine, there might be more to test for in the future.

'A very special boy'

"But I can't just sit here and wait for advances in medicine. I have to try and reach out."

Because he can't cough or swallow, it's critical that Brayden not get sick, she said. He needs a sterilized room of his own. For now, people entering the Richards house sanitize their hands. Richards cleans vigorously. Even relatives wear a mask to hold him. Richards worries what will happen when Brayden's sister Brianna, 3, starts school in the fall.

Brayden needs a special heated humidifier, she said. Ultimately, she would like a larger house where there is sterilized space for Brayden.

Brayden is "a very special boy," said Audrey Lim, a pediatrician at McMaster Children's Hospital who is working on his case.

Without knowing the cause of his medical problems, it's hard to give a prognosis. Instead, "we take it a day at a time, a week at a time," she said.

Doctors still investigating

There have been numerous neurological, genetic and metabolic tests done on Brayden, but none has solved the mystery, said McMaster medical geneticist Mariya Kozenko.

Kozenko is still looking.

"I can tell you to not know is not only frustrating for the family, but for doctors as well," she said. "We see these children and they start to be a part of our family. They're all our children.

"It's a big team of professionals involved in his care right now and we're doing our best to help his family on this journey."

Richards has no illusions. She knows Brayden's chances of survival are dim without the ability to swallow. Right now, she's just hoping for answers.

"With everything he's been through, his life can't be in vain," she said. "It's gotta be for a reason. Whether it's just to touch people or connect with other people who have children like him, I have to do what I can."

There will be a fundraiser for Brayden on Nov. 17 at 7 p.m. at the Royal Canadian Legion Prentice Room, 435 Limeridge Rd. E. Tickets are $10 in advance and $15 at the door. For more information, contact skrichards11@gmail.com. Donations can be made out to Brayden Richards Trust.