Learning centre for kids with sickle cell is this mom’s goal

By RON FANFAIR

Samantha Jules has missed a substantial number of school days because of sickle cell anemia. The chronic illness has also forced her to reschedule exams on many occasions.

“She has always had to catch up,” said her mother, Naomi Jules, who started the Sickle Cell Miracle Network (SCMN) aimed at establishing a sickle cell children’s learning centre in the Greater Toronto Area (GTA). “Obviously, the purpose of the facility will be to provide programs for young people afflicted by the disease and also fill a gap because I feel that the school system does not understand how the disease affects young people and their participation in a regular school setting.”

The hereditary disorder affects mostly people of colour.

Dr. Joan Lesmond, executive director of St. Elizabeth Health Care, who is also responsible for community engagement, estimates that one in every 10 individuals in Canada’s Black community is affected by the disease.

“The statistics are startling,” she said in her keynote address at last Sunday’s SCMN fundraiser. “Promising changes are, however, on the horizon. Various approaches are being sought for preventing sickling episodes as well as for managing the complications of sickle cell disease.

“Modifying hemoglobin composition is now being researched and gene therapy is being investigated. In addition, research is ongoing so funding is required and, of course, as we continue to increase awareness, family support is required.”

Three years ago, the Ontario government launched a state-of-the-art screening program at the Children’s Hospital of Eastern Ontario in Ottawa. Every newborn in the province is screened for several rare genetic diseases, including sickle cell anemia.

St. Lucia’s Consul General in Toronto, Stephen Julien, praised Jules for taking the initiative to set up a learning centre.

“This is a disease that has affected me personally because it claimed the life of one of my very good friends a few years ago,” said Julien.

Anthony Darius, an administrative attaché in former Prime Minister Dr. Kenny Anthony’s Saint Lucia Labour Party, succumbed to the disease in January 2006.

“We were very close from high school and I saw how this disease limited his attendance at school and forced him to put off taking exams,” said Julien. “He traveled a difficult journey, but he prevailed in spite of his illness.”

Former Ontario Conservative Party leader John Tory and former Metro councilor Bev Salmon attended the fundraiser.

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