Sask. boy battles rare medical condition that baffles doctors

PRINCE ALBERT, Sask. – Though Malcolm Bear looks like any other eight-year-old, he has a medical condition that’s baffling doctors from Calgary to Saskatoon to the United States.

Malcolm was born with a condition that makes the bottom half of his body heavier than the upper half, explains his mother, Katrina Bear.

Doctors believe water retention below the waist is causing some parts of his body to keep swelling without stopping.

His feet look like duck feet because some toes are far apart while others are close together, and his heel can’t be seen.

Medical experts have considered a slew of different conditions, but none of them quite fit. The only thing they know for sure is that it’s not genetic.

Katrina Bear says not knowing what’s happening is difficult for the entire family, who live on the Muskoday First Nation.

"Basically for myself, I’m travelling a lot, and I just feel like I have so many unanswered questions," she says.

"I almost feel like I’m neglecting my other children, and there’s a strain on everyone else too, but we still treat him just like any other kid in our household."

The family was supposed to go to Maryland for tests, but the appointment with the doctor was cancelled for no specific reason.

Malcolm has undergone two surgeries so far. Two days after he was born, surgeons removed tissue the size of a golf ball that doctors thought was a tumour on his liver.

Another surgery about five years ago was for a hip socket out of place.

Now the family has headed to Saskatoon for another surgery. If all goes well, on Thursday little Malcolm will go under the knife so doctors can take out a rod and plate in his hip and leftover tissue on his stomach.

Also, half of each foot will be amputated to be replaced by prosthetics.

Doctors are hoping the surgery removes weight and pressure on Malcolm’s lower body, so he won’t be confined to a wheelchair for the rest of his life.

"We’re between a rock and a hard place," Katrina says of the surgery. "Right now, we don’t know if he’s going to make it through the surgery, and we want to make sure we can say goodbye."

But at the same time she’s trying to stay hopeful that the surgery will make things better.

Even if it does, the boy will need a lot of physiotherapy. His mother also worries about the psychological impact of the amputations.

"He knows his family is around him," she says, explaining his state of mind. "He knows he’s different, and God made him this way. He knows that God chose him for something better."

The travel and medical expenses have also been hard on the family, but a bingo fundraiser was held on the reserve that raised more than $2,000.