Thursday night September 15, 2016, The Divine Nine and St. Jude Supporters gathered in Long View Gallery in Washington, DC. Longtime friends and supporters joined together during Black Caucus week for fun, celebration, awareness, social engagement, and a call to service. We also joined to discuss and increase awareness about our need to continually support Sickle Cell research at St. Jude Children’s Research Hospital. This was the 4th year members of black sororities and fraternities came together to help save our children who are in need of medical care for cancer and sickle cell disease (SCD). Did you know that about 40% of the patients treated annually at St. Jude are African American?
A SICKLE CELL PATIENT’S STORY
One of the night’s highlights was hearing from St. Jude sickle cell patient D’Avalon. His story reminded me of the motto I have for my daughter who is also living with SCD: “Sickle cell won’t stop your dreams.” D’Avalon painted a picture of living with extreme pain from the crescent-shaped red blood cells that sometimes stick together and can prevent major organs from receiving much-needed oxygen. He also mentioned the tough time sickle cell patients have when they are treated in hospitals outside of St. Jude Children’s Hospital. You see, “St. Jude has one of the largest sickle cell disease programs in the country with more than 800 patients.”
Unfortunately, sometimes when sickle cell patients visit other hospitals in need of relief from the pain, they meet staff members who are not familiar with how to care for them properly. Despite his pain, D’Avalon is in college pursuing a degree in accounting and is an aspiring rapper. Listening to D’Avalon’s story helps give parents like me hope for their children. D’Avalon told us of his dreams and talked about hope for his future. I am proud of him, sickle cell pain can be extremely debilitating and distracting but I was grateful to hear that he wasn’t giving up, his determination to keep going and keep fighting to live a better life is admirable.
D’Avalon also shared a personal moment that is all too real in the lives of sickle cell patients. I cried, when he spoke of not looking forward to moving into adult care at a different hospital. This is one of the aspects of the healthcare system and sickle cell treatment that has to get better. There is realistic anxiety associated with moving to a new medical system away from the patient’s childhood hematologist and transitioning into adult care. My heart and thoughts will be with D’Avalon as he makes this shift.
Five time Grammy winner, Kelly Price, took us back to 90’s with some of her great R&B hits.
At the end of the night, I wanted to say thank you. Thank you to the Divine Nine. Thank you Kelly Price for answering the call to service and helping make sickle cell awareness and St. Jude a priority. Thank you D’Avalon for sharing your story. Thank you St. Jude for your commitment to study sickle cell disease. Thank you St. Jude staff for keeping up the work so that one day founder Danny Thomas’ dream, that “No child should die in the dawn of life” will come to fruition.
Thank you all for your selfless efforts to raise more awareness about sickle cell!
A CALL TO SERVICE
We can all help make sickle cell and cancer patients have a better quality of life. If you’re interested in donating to St. Jude to help further their research and treat more patients click on the picture below:
(Below I shared a little information about the call to service event and blogging during my Brite Radio Interview)