Brandon family appealing for stem cell match to cure girl's sickle cell disease

DorcasAdetudimu, like the average 12-year-old girl, likes to dance, play the piano and sing. Buta rare disease means she can't do those things for very long without getting sore and tired.

Her family is now appealing to the city of Brandon for help findinga stem cell match so she can have a chance at a normal life.

Adetudimuwas diagnosed with sickle cell disease when she was just six weeks old. The condition, common among those of African descent, is a gene mutation that causes the red blood cells to take a crescent shape, making it hard for oxygen to flow around the body.

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"I can't do some things that other kids can do," she said, adding that something as simple as going for a swim can cause her body to go into crisis.

"I feel like I'm very limited to doing stuff," said Dorcas. The condition has led to severe pain and regular hospital stays that sometimes last for weeks at a time.

Condition worsening

Her condition has worsened over the years. She now requires blood transfusions every four weeks. Last November, she was admitted to the intensive care unit at a Winnipeg hospital and put into an induced coma while doctors deflated her lungs and transfused all of her blood.

"It's a painful thing to see your child in pain," said her mom, Juliette. "That was the worst crisis she has ever had. She'd never been in the ICU before."

Juliette, who is originally from Nigeria but moved to Brandon five years ago with her four children, was told the only chance her daughter would have at a normal life would be through a stem cell transplant. Unfortunately neither Juliette nor any of her three other kids were a match.

"I thought that was it," she said. Adetudimu knows of only two other people in Brandon with sickle cell disease, which is rare in Manitoba and Canada, but common in African nations.

Stem cell drive organized

With the help of a family friend, Juliette started organizing a stem cell drive through Canadian Blood Services. She's hoping to get as many people as possible between the ages of 17 and 35 to register and submit a cheek swab on May 17 at the Shopper's Mall in Brandon in the hope of finding a match locally.

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Since word of the drive got out, complete strangers have been contacting her wanting to help in any way they can.

"It [is] so overwhelming," Juliette said. "I didn't realize people were going to respond this way."

She said a neighbour, who she hadn't met before, showed up on her doorstep asking how he could help.

"Its encouraging to see this kind of support from people that you don't even know."

Finding a match and educating

She's hoping to not only find a match for her daughter, but to also educate the city's ethnic community, and the public, about sickle cell and the importance getting on the stem cell registry.

"Even if they don't match Dorcas, they can still match with somebody else," she said.

Until a match is found, Dorcas will need frequent transfusions. Juliette isn't losing hope.

"I believe in miracles. Nothing is impossible," she said. "I am hopeful ... [a match] would change everything for Dorcas and the family."

The stem cell drive takes place at Brandon's Shopper's Mall on May 17 between noon and 9 p.m.