Living with the same disease that took her baby sister, this woman's fighting back
Sickle cell disease was a powerful bond between Beverly and Andrea Ndukwu, until it ripped them apart
This story was first published in January 2019.
Beverly Ndukwu's life has been shaped by sickle cell disease for as long as she can remember.
She was diagnosed with the inherited blood cell disease when she was two years old and living with her family in Brandon, Man.
There's a one-in-four chance of getting sickle cell when both parents have the trait. Out of four Ndukwu children, Beverly was the only one with the disease. Since the gene is recessive, neither of her parents had it either.
For years, she longed to find someone else who shared in her experience with the disease.
Then when Beverly was 14, her little sister Andrea was born, and she had sickle cell too.
"She was a force."
Andrea Ndukwu loved to sing, and she greeted everyone she met with a hug.
"Just think of everything good and nice and fun and loving in your life," Beverly said. "That was Andrea."
Andrea had some close calls battling complications of sickle cell. But one morning in November 2007, she woke up with flu-like symptoms. By the next evening she was gone.
Watching Andrea suffer with sickle cell disease changed things for Beverly. The disease affected Andrea differently than Beverly, and in many ways Andrea had it worse.
"I didn't understand the severity of [the disease]," she said. "Andrea opened my eyes to it, unfortunately."
What is sickle cell disease?
Normal red blood cells are round, but sickled blood cells are crescent-shaped. They're rigid and sticky, and they can cause blockages in blood vessels called pain crises.
According to the World Health Organization, sickle cell disease is most prevalent among people whose ancestors are from Sub-Saharan Africa, South America, Cuba, Central America, Saudi Arabia, India, and Mediterranean countries.
Although sickle cell is the most common genetic disease in the world, it is not as common in Canada, and Beverly noticed a lack of awareness about the disease in the hospital.
"I know people are going to keep passing away from sickle cell," she said. "But I feel there are steps that we can take to prevent that, and I feel like it's just something that needs to be known more about."
A year after Andrea's death, Beverly decided to leave Winnipeg and move to B.C.
"I can't say that I didn't run away from that a little bit," she said. "From everything that reminded me of her... I just needed to find a place to heal from it."
"You can take action"
Beverly was one of the first patients in the haemoglobinopathy program led by Dr. Hatoon Ezzat at Vancouver's St. Paul's Hospital.
"I remember Bev very much having some negative thoughts about sickle cell," Dr. Ezzat said. "Understandably — she just had a bad experience with her sister."
But Dr. Ezzat continued to advocate for Beverly, and introduced her to the Sickle Cell Disease Association of Canada. That was where Beverly found the community she'd always longed to find.
"I had this craving to know someone who had sickle cell, and it was so hard to find someone," she said. "It's just nice to talk, you know, it's that feeling of normalcy — someone you can relate with."
Beverly then co-founded the Sickle Cell Association of B.C. and started advocating for education around the disease.
But just when she was hitting her stride with advocacy, she experienced a major setback. Beverly had a brain aneurysm.
The whole experience was a shock to her. It scared Dr. Ezzat too; she took Beverly to the hospital lab and showed her her blood under the microscope. Ninety per cent of Bev's blood cells were sickled.
"This is why you need to go on hydroxyurea," she said.
Beverly didn't trust the drug — a mild form of chemotherapy commonly used to treat blood cancer — but she trusted Dr. Ezzat.
"And yeah, I got on hydroxyurea after that," she said.
"I will fight for you"
After her aneurysm, Beverly moved back to Winnipeg to be closer to family.
In September 2018, 11 years after Andrea's death, Beverly hosted the first annual Andrea's Angel Walk in Winnipeg's St. Vital Park.
Beverly started an organization called the Sickle Circle of Manitoba to raise awareness and build community for Manitobans living with the disease. It's been a long time coming.
"Finally being in a place where I can actually do this — put my words into action — it makes me feel free."
This feeling of freedom is what motivates Beverly to keep fighting.
"I'm not tired. I will fight for you if you need me to fight for you. I will do my best to fight for you."
Coming full circle
A few weeks after the Angel Walk, a family contacted her through Facebook. Adetunji and Funmilola Ogundare were immigrating to Winnipeg from Nigeria with their three daughters.
Their youngest daughter Serena has sickle cell and they wanted to make sure there'd be support for her in Canada, which Beverly helped them secure.
In November 2018, on what would have been Andrea's 19th birthday, Beverly's parents hosted the Ogundares at their home in Winnipeg.
"It's nice, it's like a community of people," she said. "And I never thought I'd be saying that about sickle cell. That's kind of what I was searching for."
"I think [Andrea would] be proud," she said. "I know she's proud of all this."
The next Andrea's Angel Walk is taking place on September 7, 2019. Visit the Sickle Circle of Manitoba website for more details.
To hear the full documentary, tap or click the Listen link at the top of this page.
About the Producer
This documentary was edited by Alison Cook, and made through the Doc Project Mentorship Program.