“My life was constantly full of ‘noes’, and people telling me ‘you can’t do this’ – it was limitation after limitation,” [Victoria Gray] says. “I had to alter everything I dreamed about, every step of the way from childhood to adulthood.”
If you’re lucky enough to grow up having a healthy childhood, it’s hard to imagine the cruel realities of experiencing a sick one. Victoria describes the motions of her life as though it was a distressing movie being played out in front of her, and someone – somewhere – kept hitting the pause button. Her days were shaped not by the whimsical imagination of a young child, but by her illness. That’s because at just three months of age she had been diagnosed with sickle cell disease (SCD).
In July 2019, she became the first patient to receive CRISPR gene therapy for SCD.
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“The trial was a different experience to anything I’ve had before, because for the first time, I felt hopeful. I was fighting for my life, and for my family.” Sure, I had to travel back to Nashville a lot for testing, and there were times [during the trial], especially after the chemotherapy, that it was hard. But my dad was with me, and he kept reminding me, ‘Vicky, you’ve seen worse, you are strong enough to get through this’. It helped to lift me back up and remind me of why I was doing this.
