Brampton family desperately seeking stem cell donor for twin toddlers

At the Prajapati home in Brampton, twin two-year-olds Misha and Zoey seem to be living a regular life as they run around laughing and playing.

But parents Sanjay and Nipa say the family has been very sheltered over the last two years. 

"We can't take them to the neighbourhood park, the beach, we really can't go out much," their father Sanjay said.

The twins first fell ill for a couple of weeks at around seven months old. Initially their parents didn't think much of it, chalking it up to teething — but the girls weren't getting better, and so they ended up at The Hospital for Sick Children.

"We were there for a month, that's when we found out about their diagnoses," Sanjay said.

Misha and Zoey were diagnosed with chronic granulomatous disease (CGD), in which white blood cells are unable to kill certain types of bacteria and fungi. It means the toddlers are highly susceptible to frequent and sometimes life-threatening bacterial and fungal infections, and so their parents have to be very careful about the children spending time outdoors.

"It's very restrictive," Sanjay said.

Currently, the only cure for the twins is a bone marrow transplant, which requires a stem cell donor. Right now, there are no matches for the girls in the national registry. Canadian Blood Services says there are over 1,000 Canadians waiting for a stem cell donor, and the organization's goal is for the registry to better reflect Canada's diverse population.

As it stands, only 34 per cent of the registry is diverse, and only seven per cent of donors are South Asian. A match is more likely if the donor shares a similar background as the patient.

Dr. Julia Upton, a staff physician at The Hospital for Sick Children and associate professor at the University of Toronto, says CGD is very rare. It's estimated between 40 and 400 children in Canada are living with it.

"Parents have to remain very vigilant seeking medical attention when the child is acting differently or unwell or has a fever," Upton said.

The doctor said there will probably be more treatment options in the future, like gene editing or gene therapy, but for now, a bone marrow transplant or hematopoietic stem cell transplantation is the only cure.

"The transplant replaces [a type of white blood cell] and gives them cells that can fight infection and also regulate the immune system," Upton said.

Chris van Doorn, community development manager in stem cells at Canadian Blood Services, says it is common that people with diverse backgrounds have a harder time finding a match.