My passion to set up Sickle Cell Carers Awareness Network (SCCAN) was born out of the loss of my two children Tennema and Miatta, who both died at the tender age of 5, having suffered from Sickle Cell Anaemia. They died back in my village, Jaiama Nimikor in the Kono District of Sierra Leone, due to a lack of knowledge and awareness of the disease. Unknown to me at that time, I was a carrier of the Sickle Cell trait. We had no understanding of Sickle Cell in my village.
Having lived in England with my daughter, who also suffers from Sickle Cell, I realised that there was a variety of facilities and care available for suffers. This gave me the inspiration to set up something that would benefit other sufferers in my village where it all started. I want them to know that there is still hope, and give those suffering with the disease, a chance to live life to the maximum.
I have carried this vision with me for almost 30 years. “When your children die, you do not get to bury them, they are buried in your heart; and it is difficult to let go”. I decided in January 2008, to finally lay them to rest by setting up SCCAN. My surviving daughter was thankfully, able to beat all the odds in Africa considering the lack of facilities. Caring for her over the years on a daily basis, attending numerous hospital admissions and appointments, working with professionals and researching more about the disease has made me come to the realisation that it is about time I put all my knowledge gained into action, by educating other carers and suffers that have no knowledge of how to deal with the problems related to Sickle Cell.
My passion for SCCAN is born out of the need to improve the lives of the less privileged in our society and prevent unnecessary deaths amongst our people.