FOUNDERS' STORY

Bo’s Story

Sickle Cell has been a part of my life as long as I can remember.  I became aware of the disorder at an early age because my cousins, uncles, and my youngest brother all had sickle cell.  My brother Milton Gilliam suffered tremendously and I saw his pain up close.  I can even recall when Milton was diagnosed with sickle cell because his legs, arms and back would hurt.   I watched him as he suffered but dealt with the pain his entire life.  It hurt me too because my brother was my best friend.

Let me say that despite all that Milton endured, he beat all the odds.  He was supposed to have passed away at the age of two.  Then the doctors said he might make it to eight years old.  The medical professionals pushed their projected age of death to 12.  Then it became 21.  He lived to be 48 years old.  Milton lived as long as he did because he was a beneficiary of clinical trials.  I became accustomed to watching him give himself blood transfusions and check his own vital signs. 

 Ironically, through all of it the whole family leaned on him.  He was our mother, brother, our father, sister, preacher, and teacher.  He was everything to us.  Even though he was the youngest and was in a constant physical battle he had inner strength and the power to soar like a 747 jet.

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As I watched him during his final days on earth he still had a positive outlook.  One day he told me "Big brother do something about it, let them know that sickle cell is still alive."  My brother may have soared from this earth but I am still here fulfilling my promise to make people aware that sickle cell lives on and we must make it a mission to find a cure.

Marilyn’s Story

For me sickle cell was a new phenomenon that I learned about when I got married.  Luckily my husband’s mother encouraged him to check with me about whether or not I had the trait.  She was very adamant about that because he had the trait and she knew the impact of not knowing.  She had a son with the condition.  So, we had our blood tests done at the public health department.  At the time this was required in order to get a marriage license.  Education was provided to us by the public health nurse.  

The education helped us to know that we should have our children tested and if one of them had the trait, then they should be educated and made aware of the implications of that and precautionary measures they should take should they decide to have children in the future.  The unfortunate thing is that not many people are aware unless the condition exists in their family and they know about it.  In the old days and even today, families did not like to talk about the existence of sickle cell in their families.  There was a stigma attached to the condition even though it was hereditary.  

We must encourage more and more people to talk about sickle cell and how the spread of it can be managed or prevented.  These uncomfortable conversations must be had and with candor.  If you do not know or are not sure, then you should allow that conversation to be the impetus for being tested for the trait.  This is what drives my passion for awareness and, of course, a cure.