Malcolm Bear might seem like a regular eight-year-old, but he is unique.
The Grade 3 student has a medical condition that's baffling doctors from Calgary and Saskatoon to the United States.
He is the only person in Canada who was born with a condition that makes the bottom half of his body heavier than the upper half, said Malcolm's mom, Katrina Bear, in a phone interview. Doctors believe water retention below the waist is what's causing some parts of his body to keep swelling without stopping. It's gotten to the point that some of his toes are far apart while others are close together and his heels can't be seen. Medical experts have considered a slew of different conditions, but none of them quite fit. The uncertainty has been affecting everyone, from the doctors to the family.
The only thing doctors have confirmed is that it's not genetic, said Katrina. Being in the dark about everything else makes it hard for the family to cope.
"Basically for myself, I'm travelling a lot, and I just feel like I have so many unanswered questions," explained Katrina. "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, one two days after he was born to remove tissue - the size of a golf ball - doctors thought was a tumour on his liver. Another surgery in 2004 or 2005 was for a hip socket out of place. He has since undergone "tons" of MRIs and scans to check bone growth to make sure he's developing correctly. The list of hospital visits continues. The family left Muskoday First Nation Tuesday to head to Saskatoon for another surgery. Katrina and Malcolm will attend a pre-operation assessment this morning. If all goes well, Malcom will be on the operating table Thursday at noon. This time, he's going 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 said of the surgery.
Malcolm's six other siblings and both his parents are attending this surgery. His mother still has concerns about the repercussions it could have.
"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," she sighed.
Katrina is not the only one concerned about the surgery. Malcolm's siblings are as well.
"They're emotionally hurt ... They're more worried about him and how he's going to react than themselves," Katrina explained.
Malcolm has to be watched to make sure the swelling doesn't get worse. Right now, Katrina is concerned with the lower ribs area because it's enlarging. The surgery represents hope for the family that things will improve for Malcolm. As a result of the surgery, he will need an extensive amount of physiotherapy. Katrina added that he would be confined to a wheelchair and to a bed until he's healed. The family will do a lot of travelling in the next few months.
Katrina hopes that doctors will be able to come to Prince Albert to avoid the expense of going to Saskatoon. Both parents will alternate visits to see Malcolm, and psychologically speaking, Katrina is worried about the adjustment and toll Malcolm will face because of the loss of half of each foot.
"You get used to having something that won't be there," she said, adding that Malcolm's reaction to everything is one of many concerns.
Malcolm only turned eight last month, and at such a young age, his comprehension of the circumstance is simple.
"He knows his family is around him. He knows he's different, and God made him this way. He knows that God chose him for something better," Katrina said, adding that some doctors have been talking about naming the condition after him. She acknowledged that Malcolm would be happy no matter what the name is because people in the future would know what to call it.
The travel and medical expenses have been hard on the family, tightening their budget, but a bingo fundraiser was held to help - more than $2,000 was raised. Right now, a nine-year-old friend of the family and neighbour is going door-to-door collecting plastics and bottles to raise more money.
"They're a really good family," Katrina said. They provided a ride to half of the family Tuesday. The other half travelled with Katrina's sister.
While the family isn't asking for any help, Katrina admitted they could use it, any kind of help.
"We're not picky ... I just want people to get to know him better because there are a lot of stereotypes," she said.
slacroix@paherald.sk.ca
Good luck, Malcolm. Stay strong everybody.