Sickle Cell awareness: Help a child who can’t play

December 28, 2017

Nelaja Alphonse, founder of the Sickle Cell Awareness Foundation of Trinidad and Tobago, shares with readers of Sweet TnT Magazine the story behind her foundation that aims to fight Sickle Cell Anaemia and Sickle Cell trait that can affect anyone from birth. Her mission to make people aware of the dreadful disease and to join her in the fight to find proper care for victims in T&T has already brought comfort to many families through past fund raising events. Nelaja continues her efforts and hopes to bring more smiles to faces each year.

I am a media manager with an advertising company. Basically, I have been running the Foundation alongside my everyday job, by myself. Everyone is always happy to be on board until the work starts… lol. There is a lot to do, I had taken a hiatus because the support was so depressing, but I plan to start back again soon.

The Sickle Cell Awareness Foundation is for everyone, those who suffer from the full blown disease and its trait already know what it is about. The Sickle Cell Awareness Foundation was formed in October 2010 with a mission to promote and raise awareness and understanding about Sickle Cell Anaemia and Sickle Cell trait.

My cousin died from this in February of that same year, I was privy to his suffering when he lived with us, when he was very young. He could not play with us, he was always in pain, long hospital stays, just a very dismal childhood. It affects a large number of persons both children and adults alike.

Therefore, despite precautions the life expectancy was usually not beyond 40 years old and in most cases, claimed the lives of young children. Fast forward to 2015… bone marrow transplants can be possible without dangerous chemotherapy. This means the possibility of a cure is closer.

Sickle Cell Awareness Mission

One of the main missions of the the Foundation is for persons to get tested for the Sickle Cell trait. Persons with this trait may genetically pass the disease onto their children. Two persons with this trait have an even greater risk of having at least one child or more with Sickle Cell. In the long term we would like to set up an effective Sickle Cell Crisis Ward and Mandatory Newborn Screening.

Education of this disease will promote an understanding of the effects of Sickle Cell on the daily lives of those afflicted and in turn help to eradicate this dreadful disease.

The Foundation plans to formulate and bring on stream an education and outreach programme in Trinidad and Tobago with conferences and workshops scheduled for other Caribbean islands. In doing so, we would need financial support in helping us to print brochures, run ads and campaigns, and help us with events to raise funds.

Although the Foundation is newly established we have a clear and determined mission to which we are fully committed.

April 2016 – Issue 21 www.sweettntmagazine.com

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