I was born in Togo, West Africa. My family took me to France when I was eight months old to seek treatments after I was diagnosed with sickle cell SS. At the age of 14, I moved to the US and got my gallbladder removed. I then moved back to Togo a year later but then returned to the US, New Jersey, to be specific, at the age of 16 to get better care. Unfortunately, the constant trips to the hospital, clinic follow-ups, and everything else took a toll on my family. I was able to find a hematologist a year later.
Over the years, things progressively got bad; with constant pain, around the age of 26, I had more frequent acute chest crises. I needed more transfusions almost every other week, and infusions sometimes three times a week, I would go into the hospital for hydration and chelation for iron overload.
I decided to move forward with gene therapy because I got to the point in my life where I had nothing to lose. With blood shortages happening during the pandemic, trying to keep a full-time job, and constantly getting sick, something had to change. The average number of visits to the hospital was 12-14, all of this impacted me mentally, and I wanted to do anything it took to get into a trial. I got accepted in the Nashville CRISPR trial and received my treatment in February of 2021.
Although the process of the treatment was challenging and tough at times, with having to go through chemotherapy, etc, I would make the same decision today. The treatment is by no means easy, but today my life is completely different than it was. I no longer have ER visits. The pain I experienced today is due to the previous damage that happened with AVN. I hang out with my wife, have a fulltime job in healthcare and run my own Entertainment business as a DJ and Dance Educator. I even performed for a whole weekend and felt great. I now go to the gym every day and feel better than ever.”