Helping patients with sickle cell is group’s focus

By RON FANFAIR

Victoria Idowu has learned to cherish every moment of her life after a near-death experience almost two years ago.

Her family had already started to make funeral arrangements when she lapsed into a coma following a blood transfusion that helps reduce recurrent pain crises for sickle cell anemia patients.  She recovered after being hospitalized for three months and will graduate this semester from Philip Pocock Catholic Secondary School in Mississauga.

“That was the toughest and most difficult time in my life,” said the 19-year-old shortly before she was presented with a bursary at the Seed of Life fundraising awards ceremony last Saturday night in Mississauga. “I am just grateful for this acknowledgement and happy to be alive.

Idowu, who enters George Brown College Early Childhood Education program in September, plans to establish a drop-in centre where children suffering from sickle cell and their parents can learn more about the disease from qualified professionals.

“I want to provide support and education for families who may feel lost after learning that their newborn has the disease,” she said. “I am already preparing for this task by visiting with sickle cell patients in hospitals and doing some speaking engagements through Seed of Life. That is my calling.”

The organization also presented a bursary to 18-year-old Neneh-Iye Bundu.

Idowu and Bundu were diagnosed with the disease six months after birth and both have missed substantial classroom time because of frequent hospitalizations. They praised their families and teachers for providing them with unyielding support.

“I missed a lot of time in school last semester, but I did not use that as an excuse not to get my assignments done and graduate on time,” said Bundu. “Though the bone pain can be overwhelming during the winter months, I am driven by my determination to succeed despite the hurdles I face and by the support I get from those close to me.”

Bundu, who graduates from St. Marguerite d’Youville Secondary School in Brampton next month, plans to follow her mother’s footsteps and pursue Nursing at the University of Toronto. Her career goal is to become a health administrator.

Devastated by the loss of her Nigerian-based brother, Sunday Afolabi, to the disease a decade ago, Lanre Tunji-Ajayi set up the Seed of Life philanthropic organization in June 2005 to raise awareness about the hereditary disorder that affects mostly people of colour.

She recently spearheaded the launch of a campaign to create a comprehensive adult thalassemia and sickle cell disease program in the Greater Toronto Area that is adequately resourced to provide appropriate clinical staffing and access to supportive care.

Petition forms, which can be obtained through the organization’s website at www.seedoflifepo.org, must be signed and returned by June 30, 2009 by fax to (416) 969-7420 or by mail to Coalition to Save Our Young Adults c/o Institute for Optimizing Health Outcomes, 151 Bloor St. W. Suite 600, Toronto, M5S 1S4.

“Right now, when children leave the Hospital for Sick Children, they have nowhere to go and there is no comprehensive care for adults with the disease,” explained Tunji-Ajayi. “The Ontario government is trying, but the needs of patients and parents of patients with the disease far outweigh what the government is trying to do at the moment.”

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 being screened for several rare genetic disorders, including sickle cell anemia.

Noting that one in 10 Greeks have thalassemia , a genetic blood disease prevalent among Mediterranean people, Greek-born Canadian Member of Parliament, Jim Karygiannis, has thrown his support behind the Seed of Life-led campaign, stressing the urgent need for care for individuals suffering from the disease and sickle cell anemia.

“I have five daughters and one of them in their genes could be carrying thalassemia,” he said. “My challenge to you tonight is where the rest of the Mediterranean world is. In this disease, you are not alone…My challenge to you is to expand the horizon. This is a fight we must carry on together.”

The theme of this year’s event was “Educating, Supporting and Bringing Hope to Sickle Cell Patients.”

In his keynote address, Revivaltime Tabernacle Worldwide Ministries Bishop Dr. Audley James said that the annual fundraiser provides hope for countless sickle cell patients across the province and Canada.

“I am so glad that the visionaries are here to hear from you, to feel your compassion and to provide hope for all those infirmed,” he said. “The challenges are great, but I do believe we have the capabilities and abilities in us to provide hope for those who grope in darkness and are crying out for help.”

In addition to presenting bursaries, Seed of Life also honoured Toronto Police Service officer Ojo Tewogbade (Humanitarian), Tayo Ojajuni (Community), Ian Quirt and Paks Madikiza (Medical) and Deborah Kelly and Rebecca West (Media) with awards of excellence.

Entrepreneur and Nigerian Canadian Association (Toronto chapter) financial secretary, Ndidi Kanu, was recognized with the Volunteer of the Year award.

Leave a Reply

Your email address will not be published.

*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

Columnists

Archives