Advocating for My Daughter

By Georgene Glass

I am a 35-year-old mother of two: a 16-year-old (AA) and a 3-year-old with sickle cell disease (SS). Before Gia, my youngest child, was born, I didn’t think much about SCD, and I felt bad for not displaying more concern when my niece was experiencing the exact same situation with her daughter. Even though I have always known what SCD was, and I knew that my children’s father and I both carry the sickle cell trait, I never really put much thought and concern into SCD until it was in my own backyard.

When I found out that my second child had sickle cell disease, I began to research what that truly meant and the possible complications. Living in California at the time, the nurses and doctors were very hands-on. They educated me about sickle cell disease and what to look for when going to the emergency room. They provided resources and support including ways to engage with other people affected by sickle cell.

However, after moving to Nevada, my daughter (only 1.5 years old at the time) had her first serious complication from SCD. She came down with pneumonia, but the hospital just sent her home. We had to find a hospital in a more urban area that was more familiar with SCD where she was quickly admitted to the ICU. It was a scary situation. I felt helpless, and I knew that I was the only person who was going to go the extra mile to make sure my child was okay. This is when I realized that unlike California, Nevada lacked the proper medical and emotional resources for people with SCD. This situation showed me that I needed to do something to help not just my own child, but every other person with SCD in Nevada.

I decided to start an organization to advocate for people with sickle cell in Nevada. I am proud to say that I started my own foundation, Dreamsickle Kids, that is raising awareness for sickle cell disease all over the Las Vegas Area and beyond. Our mission is to #MakeSickleCellPopular so that everyone can be aware of the plight of Sickle Cell Warriors and give those with SCD the support that is long overdue. We host blood and bone marrow drives, encourage people to donate for a cure, and host events to celebrate the sickle cell community. Some of our accomplishments include holding the first Sickle Cell Walk in Las Vegas in 5 years, being a part of the first Annual Dr. Charles Drew Blood Drive hosted by the Red Cross, and appearing in several radio shows, magazine articles news shows, and on the front page of the local newspaper, Las Vegas Review Journal. We were even invited to assist a hematologist in Nevada with a Sickle Cell Action Plan for Nevada and an assemblywoman with a Sickle Cell bill she was writing.

My experiences with my own child’s sickle cell disease that inspired me to start Dreamsickle Kids taught me a lot. Some advice I have for other is: When you can feel something is wrong, always advocate for yourself or your child, because the person next to you may not always know what’s in the best interest of someone with SCD.

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