Giving people with sickle cell anemia hope
Scarborough family raises money to help their son and others fight the disease
Asaiah Gordon-Edwards' life hasn't been easy. He's visited the hospital more than 25 times, received 19 blood transfusions and has undergone a serious operation all before his fourth birthday.
Asaiah has sickle cell anemia, a disease that affects about one in 20 Canadian newborns each year. His parents, Scarborough residents Kai Gordon-Edwards and Phillip Edwards, discovered that Asaiah had the disease when he was only three months old.
Sickle cell anemia occurs when a form of hemoglobin, a protein found in red blood cells that helps transport oxygen, is produced in the body. Normal red blood cells are shaped like doughnuts and are soft and flexible, but sickle cell anemia causes these cells to become sticky, soft and fragile.
Instead of moving through the blood stream easily, these cells can clog blood vessels and deprive vital organs of the oxygen they need.
For people with sickle cell anemia, these cells can cause severe episodes of pain, called crises.
Asaiah's repeated crises led to an operation to remove his spleen when he was only two years old.
Despite Asaish's illness, his mother said he is a normal three-year-old boy.
"He's vibrant, resilient and he has his own personality," Gordon-Edwards said. "If you weren't told that he had sickle cell, you wouldn't really know it."
Both Gordon-Edwards and her husband have a sickle cell trait, meaning they don't have the disease themselves, but can pass it on to their children. Asaiah's older brother Shomari, 9, also has the sickle cell trait.
Asaiah's sickle cell is controlled by a daily regime of antibiotics. Because of his operation, Asaiah will take antibiotics regularly for the rest of his life.
"I think it's a little easier now because he's able to speak," Gordon-Edwards said. "It was a little more daunting when he wasn't able to vocalize his pain."
Along with her mother, Fern Watson, Gordon-Edwards has now begun to advocate for sickle cell awareness.
Watson and Gordon-Edwards have created an organization called the Amali Project, which has generated more than $20,000 for sickle cell treatment. The Amali Project isn't a not-for profit charity, it is simply the result of a family who decided to raise money to combat the disease.
"My mom, Fern, has been a source of strength when I have become emotionally drained with our efforts and Asaiah's sickness," Gordon-Edwards said.
Sickle cell is more prevalent in people of African-Canadian descent, which leads to the incorrect notion that only African-Canadians can have sickle cell. In fact, the disease can also affect people of Mediterranean, Caribbean, Arabian and East Indian ancestry.
"People don't want to talk about it. They don't want to acknowledge it's in the family. I've even come across doctors who are not familiar with it," Gordon-Edwards said. "We were pushing it as not just a black disease, but a disease that affects us all."
Gordon-Edwards' fight to promote sickle cell awareness has taken her all the way to provincial parliament.
Last year, Gordon-Edwards addressed the legislative committee on newborn screening at Queen's Park about adding sickle cell anemia to the newborn screening list. As a result of those meetings, the government now screens babies for sickle cell.
"We want to change the minds of our elders and people in the community," Gordon-Edwards said. "We want to de-stigmatize the disease."
For Asaiah and others with sickle cell disease, Gordon-Edwards' efforts mean that people with sickle cell anemia can look forward to a bright future.
"We're hoping that the future will hold a lot of new discoveries."
