Lanre:

The Sickle Cell Awareness Group of Ontario is a leading patient organization that’s dedicated to supporting patients and families affected by sickle cell disease. We support advocacy with the government, schools, workplace, healthcare system. We provide care providers and patient disease management education programs. We support health promotion, community awareness. We also help to provide scholarship for the young students who have sickle cell disease and in dire financial situations. So, in a nutshell, the Sickle Cell Awareness Group of Ontario is a support and advocacy organization for families affected by sickle cell disease.

As a small organization, the Sickle Cell Awareness Group of Ontario is currently 100% volunteer run. While that is good in principle, volunteers also have day jobs. And so it makes it very difficult for us to do many of the programs that are essential to supporting the families with sickle cell disease.

By being part of the Federated Health Charities and receiving donations we’ll be able to hire, even if it’s one or two staff members, to support our programs. We will be able to also put in place additional programs to support these families that do need us. They dearly need programs and support. And if we receive donations, we will be able to move forward with many of those programs that will improve the care that they do receive in order to ensure they have improved quality of life.

Lynella:

I didn’t find out. My parents did. I was three years old, living in South America, Guyana, and they find me being a colicky child so they explore avenues with what might be wrong. And I was tested positive for sickle cells anemia it was called back then. Now it’s called sickle cells disease. So they received the bad news. I was a child so I didn’t really feel the impact of it as a child, not knowing what it was then.

But in my adolescent years of life I’ve come to understand what it was, how it impact me, how it made me feel. So, being shunned out from a lot of things that normal kids would have done, it has made an impact that way in keeping me restricted to limited things that I could physically accomplished during an adolescent time in your life as a teenager.

This disease affects my life in many different ways. Having to spend most times in the ER in a hospital, long weeks, months, doctor visits, having a social life, keeping a steady job, being part of school system. It affects in every physical ability I do have, you know, sports and hanging out. You have to prepare yourself to have a bad day and start with a good day and end with a bad day. You have to just roll with, just cope, like coping with the disease.

Without the help of a charity, I would probably be just wondering if I was the only one still. You know, going in and out of life without the support, going in and out of crisis without someone to relate to, not having the education to follow up with the disease, not having the advocacy of a charity to help voice the concerns of the disease. So, it’s given me the support to come out and say, hey, my name is Lynella Welcome. I have sickle cells disease and I cannot do X, Y and Z, things that you could do. I have limitations to my physical self and what I accomplish in a day and how much of it I can do in one day.

Lanre:

So the Federated Health Charities are supporting the organization to get donations from the Ontario Public Services, the OPS. And these donations are helping to ensure that our programs continue to run and that we continue to support the families that dearly, dearly need our support. So, we’re very happy that sickle cell disease is getting donations through the Federated Health Charities to ensure that we continue to move forward in our mission. And our mission is simply to improve the lives of individuals living with sickle cell disease.

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