The bone pain is sometimes unbearable and they miss substantial classroom time because of frequent hospitalizations.
Adebimpe Daniells is familiar with these experiences. She was born with sickle cell anemia 25 years ago. She accepts that. What she cannot endure is physicians asking if she really has the disease or if she’s a drug addict when she shows up at a hospital for intermittent episodes of pain that’s the most consistent manifestation of sickle cell disease.
“That’s so frustrating and I go into tears every time that happens,” said Daniells who was one of three recipients of the Sickle Cell Awareness Group of Ontario (formerly Seed of Life) bursaries presented last Saturday night at the organization’s fifth annual awards gala. “That’s more painful than coping with the disease or the loss of my sister who had sickle cell and who died during childbirth five years ago.”
Since joining the SCAGO in 2008, the George Brown College computer programming student has become a key spokesperson, appearing on television and at community workshops and seminars. She’s also one of the organization’s patient coordinators.
Bursaries were also presented to aspiring teacher and youth mentor Lanre Adeshingbin and Hamilton resident Alfred Mensah, a Mohawk College of Applied Arts & Technology financial services student, who travelled to Toronto by bus to receive his award.
“It’s been very hard living with the disease,” said the 31-year-old Ghanaian whose father raised him in Canada after his mother died 26 years ago. “But I have battled in the face of adversity and pain and have been able to make it this far.”
Devastated by the loss to the disease in 1999 of her Nigerian-based brother, Sunday Afolabi, Lanre Tunji-Ajayi created the philanthropic organization in June 2005 to raise awareness about the severe hereditary blood disorder that affects mostly people of colour.
“We continue to be inspired by those whose profile and courage raise awareness and inspiration,” said Ontario’s Lieutenant Governor David Onley. “Such a person was Sunday Afolabi, the brave young man who lost his battle to the disease. Such a person right now is Cincinnati Bengals rookie defensive tackle Geno Atkins who was born with sickle cell trait.
“There are others in this room whose profile may not be that of a star athlete or celebrity, but whose dedication to coping with and finding a cure for sickle cell encourages us all. But whether it’s family members, caregivers or friends, we are all here this evening because there is hope for better treatment and eventual cure.”
Onley, who has been living with the effects of polio since the age of three, is confident that a cure for sickle cell will be found. Two vaccines have eradicated polio and significantly reduced the global incidence rate.
“Since then, we have advanced from annual outbreaks around the world that affected as many as half a million people a year to one where polio has been wiped out from the planet,” Onley said. “And I have no doubt at all that, thanks to efforts such as yours with the group and with researchers being recognized here tonight, that a similar outcome will be achieved for sickle cell anemia.”
The SCAGO presented a Medical Award of Excellence to Dr. Jacob Pendergrast, a transfusion medicine specialist at Toronto General Hospital, and a Humanitarian Award of Excellence to St. Lucian-born Unita Lewis who founded the Ottawa Sickle Cell Disease Parents’ Support Group in 1977 after her son was diagnosed with the disease.
Community Awards of Excellence were also presented to senior insurance and financial advisor Jun Xiong, entrepreneur Kabu Asante, evangelist Dr. Pius Igberase, social worker Helen Antoniades and Planet Africa TV host and producer Patricia Bebia-Mawa.
Bishop Dr. Audley James, a member of the SCAGO advisory board, delivered the feature address.
“When I think of Lanre, her husband and this great organization, I think of an achiever,” said James who is the founder of Revivaltime Tabernacle Ministries Inc. which is celebrating its 30th anniversary this month. “I think of someone who was willing to do more than that which is popular and I think of someone who makes some sacrifice beyond our wildest imagination. I think of the number of hours that Lanre has dedicated to the good service of eliminating sickle cell from the continent.”
This year marks the 100th anniversary of the first documented case of sickle cell disease by Illinois-born Dr. James Herrick.
“It’s rather disheartening that 100 years later, we have not made much progress in finding a cure for the disease,” said Dr. Erik Yeo, the head of the Toronto General Hospital Sickle Cell clinic.
For the first time, the SCAGO presented laptop computers to seven students living with sickle cell disease. The recipients were Tahira Soje, Amy Omelebele, Molly Chin, Rukaya Yakubu, Che-Anne Alleyne and brothers Dejon and Isaiah Campbell.