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Victoria Gray is a mother, public speaker, sickle cell warrior, patient advocate, and a wife living in Mississippi. She was diagnosed with Sickle Cell Disease (SCD) at three months old. At age 33, Victoria became the first person in the world to receive a CRISPR-based gene editing treatment for SCD. Since then, she has dedicated herself to her family and to advocating for other sickle cell warriors.
Read on for a snippet of our conversation with Victoria.
Gill: Tell me a bit about yourself.
Victoria: I am a mother. I have four kids, but I gave birth to three; my fourth is my bonus daughter. I am a nana now, as well. Public speaker, sickle cell warrior, patient advocate, and a wife. I’m a person who leads with my heart.
I love the simple things in life because I went so long without being able to enjoy them. I enjoy caring for myself and my family, relaxing, going for walks, and reading. I like action books, and I like real stories like autobiographies. I’m into audiobooks because I don’t have a whole lot of time to sit down and read, but I miss turning the pages. I used to do that a lot when I was younger. That was my way to get away from the world, my situation.
Gill: What happened during your childhood?
Victoria: I was diagnosed at three months old with Sickle Cell Disease (SCD). I had my first crisis at three months. During my childhood, the pain and the title of ‘sickle cell disease’ were restricting. My hematologist told my grandmother, who I lived with, that I couldn’t have any type of exertion. I couldn’t get too hot, and I couldn’t get too cold. I would have to sit out when other kids played during PE in school. I wasn’t allowed to participate in any activities at the gym. It left me feeling a little odd and out of place. I felt isolated. All the things I wanted to do and to be, just feel normal and interact with other kids, were restricted.
Gill: What other kinds of barriers did you face because of SCD
Victoria: I wanted to join the cheerleading team and to play basketball, but I was always told no. If my hematologist said I couldn’t do something, my grandmother was strict on following that. She wanted what was best for my health. Even when I was home, my time spent outside with my brother and family would be limited. I could only play for a few minutes before I would have to come in and take a long break.
Because I couldn’t play outside for very long, one of my teachers, Ms. Adams, started giving me books to read. I would take them home and spend hours reading because it sparked my imagination. A good book is very descriptive – you can see the scenery and hear the sounds and take yourself to that place. That’s how I had my action, my adventure, through books like the Goosebumps Series, Sounder, and books that told African-American stories. My childhood was in those stories.
As I grew older, my medications changed. They caused my vision to blur anytime I put a page in front of my face. I couldn’t read my books anymore, and it created a hole in my life. And honestly, a sense of anger with God. I’m a woman of faith. I grew up in the Church of God and Christ. And so when I lost the ability to read my books because of the medications that I was on, I was like, “God, why did you make me so smart if this is going to be my life? I can’t read my books. I can’t learn new words. What am I here for?”
Continue Reading Victoria’s Story
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