Stem cell donations save life of Ontario boy with rare disease

“It was terrifying. I thought we were going to lose my son.”

Standing in front of people gathered to celebrate the 10-year anniversary of Brampton Civic Hospital’s public cord blood collection site, Manny Ford, a mother of two from Guelph, talked about the stem cells obtained through Canadian Blood Services’ Cord Blood Bank that saved her son’s life. 

While speaking to the crowd and to reporters afterwards, she made one thing very clear: if not for cord blood donations from an array of ethnically diverse donors—many of whom donate in Brampton—her three-year-old son, Tristan, would not be here today.  

The Ford family’s harrowing journey to a bone marrow transplant began during the height of the pandemic in 2020, just five weeks after Tristan was born. When he was a little over a month old, he developed cold symptoms, and since newborns are naturally fragile and COVID-19 was newly circulating, the Fords thought it was best to bring him to the hospital. 

“They said it was just a cold, but the next day, he was lethargic and not nursing, so I was like, ‘we’re just going to go back to the hospital again,’” Ford told INsauga.com. 

“He was very pale, so they did some tests and they said ‘he needs blood,’ and that was all they knew at the time.”

Tristan was transferred to McMaster Children’s Hospital in Hamilton and admitted, but the next two weeks were a blur of testing and unanswered questions. 

“They tested him for everything and they could not figure out what was wrong with him. It was terrifying and I would know when they were coming to see us because they would pull out a big binder and they asked me every single question,” Ford says.

Doctors were able to rule out leukemia but couldn’t figure out why he kept requiring blood transfusions. Initially, they thought his tiny body might just be overreacting to a viral infection and after he appeared to get better, they sent him home.

A few days later, Tristan’s paleness and lethargy returned and the Fords found themselves back at the hospital. 

One thing that made doctors suspect Tristan’s case might be the “zebra” medical professionals refer to when they say to look for horses (or more common illnesses) first when you hear hoofbeats was his unusual silvery hair that leaned more grey than blonde. 

After testing a sample of his hair, doctors told Ford that Tristan had a rare genetic disease called Griscelli syndrome and that he had the subtype that causes the body’s immune system to attack and destroy healthy tissue. 

Up until that point, doctors at McMaster had never seen the disease in a patient and the doctor at SickKids Hospital in Toronto, who Tristan was eventually treated by, had only seen two other cases. 

The only hope for a long-term cure for Tristan was a bone marrow transplant, and it turned out, much to Ford and her family’s despair, that neither she, her husband, nor her young daughter was a match for the infant. 

“The waiting was terrifying,” she says, adding that she learned that it’s harder for mixed-race patients (she is South Asian and her husband is white) to find suitable matches. 

“Obviously, I was glad to have a diagnosis, but I had no idea what the diagnosis meant or what a bone marrow transplant process was. I thought we’d do a big campaign to get donations, but the hospital said we didn’t have that kind of time.’” 

The Fords eventually found a match that came through the national public bank that Brampton Civic Hospital contributes to. According to the William Osler Health System, which operates the health care facility, the hospital’s women’s and children’s unit has collected nearly 10,000 cord blood units in partnership with Canadian Blood Services since 2014. 

Blood is collected from donors who agree to donate umbilical cord blood after delivering babies at the hospital. Women who are good candidates for donation don’t have to do anything unusual or undergo any invasive procedures to donate blood; it’s simply collected after birth. 

According to William Osler, cord blood contains life-saving stem cells that are used to treat over 80 diseases and disorders, including cancer, sickle cell disease, anemia and immune system disorders.

Brampton Civic is one of only four collection sites – and the only community hospital – in Canada with the program. 

“It’s the ethnically diverse contributions the community can provide,” Lindsay Hogeboom, director, infection prevention and control, women’s and children’s program, told INsauga.com, adding that family members are not always a suitable match for people who need transplants. 

“It’s really about making sure the registry has that ethnic diversity to it so that when there is someone who needs a stem cell transplant, there’s a match in public banking.” 

When women decide to give birth at Brampton Civic, Canadian Blood Services staff talk to them about donating. 

“When you first see your obstetrician or midwife, you can start to have those conversations. Some might go the private [donation] route, but we want to advocate for donating to public banks. When women come into labour and delivery, all of the consent, all of that is discussed; it’s not a last-minute conversation,” she says, adding that some conditions and diseases, such as some cancers, might preclude a pregnant woman from donating. 

“We have over 5,000 births here a year and there’s a real opportunity to donate and raise awareness around the benefits.” 

While waiting for Tristan’s transplant, Ford said the family was in and out of the hospital constantly, which took its toll.

“When they called and said they found a close enough match on the public registry so they could move forward, I can’t even describe the tears and the feeling. We still had a long road ahead of us, but things moved quickly,” she says.

Ford says doctors began administering chemotherapy to effectively kill Tristan’s immune system in preparation for the transplant. On the day of the procedure, the infant underwent what just looked like a typical blood transfusion. 

“They bring a bag in and they pop it in and just wait. We were expecting something dramatic and it wasn’t at all,” she says.

“After that, it was a lot of waiting and checking his blood counts and giving him transfusions as needed.”

Despite his fragility and the seriousness of his disease, Ford says Tristan handled the procedures well and even laughed for the first time in the hospital. The days and weeks were harder for the family.  

“Unfortunately, my daughter (now nine years old) couldn’t go see [Tristan]. Only my husband and I could, so that was a really hard time for us. She handled it well. It was hard for her not having mom around because I pretty much lived at the hospital. We were fortunate that we got to stay at the Ronald McDonald house. Otherwise, I wouldn’t have seen my daughter, really.” 

Now, over a dozen total transfusions (blood and bone marrow) later, Tristan is meeting all his major development milestones and getting ready to start school in the fall. He has also been able to start catching up on routine immunizations recommended for young children.

“Developmentally, he can do everything an almost four-year-old can; he’s just a little small for his age. He’s very lovely and interacts with everybody, and he’s not shy at all,” Ford says, adding that he’s still a bit more vulnerable and was recently hospitalized with a stomach bug. 

Now, Ford and her family are hoping to raise awareness and encourage more people to donate blood. They hope to get at least 21 donors, the number Tristan received while he was sick. 

Ford–who also donated cord blood after giving birth to her daughter—wants people to talk more openly about donating blood, tissue, and organs. 

“Talk about if you’re a blood or organ donor while you are healthy,” she says.

Editor’s note: This article has been updated from its original version to clarify that the donation was anonymous and came from the public bank that Brampton Civic contributes to as one of four collection sites in Canada.