Alyssa Tapley received life-saving CRISPR treatment
Alyssa Tapley
When the bone marrow transplant failed to treat my leukaemia, it was like: this is it, there’s nothing else now. The doctors were telling my parents it was a matter of weeks. Not years, not months, but weeks.
I’d just turned 13, and I was thinking: “Oh my gosh, this is my last birthday. I’m never gonna grow up and have a family and do all the things that normal people are completely used to, like those normal, everyday things.”
But then we heard about the trial and went down to Great Ormond Street Hospital in London. It was like sci-fi. They were like: “Oh, we’re gonna put some CAR Ts in, and they’re gonna multiply and multiply some more, and go around and fight and kill your all your cancer cells.”
It all started after Easter in 2021. When I went back to school after the coronavirus lockdown ended, I was really tired. I found it hard to walk home from school; I was falling asleep during breaks and lunches. Eventually, I was too sick to go to school.
Really early one morning, my dad noticed my breathing didn’t sound good, and we ended up in A&E. When they put the monitor on me, they started shouting for help. I was in intensive care with double pneumonia for days, and when I woke up, I found out I’d already been put on chemotherapy for leukaemia – that’s when the immune cells in your blood turn cancerous.
Mum and Dad say it took the doctors a few days to work out what was wrong. That might be because I had T-cell leukaemia, which is less common than B-cell leukaemia.
Then it all moved really quickly. I had a month of chemo at Leicester Royal Infirmary. It wasn’t working, so I was put on more intense chemo, but that didn’t work either. So at the end of October, I went to Sheffield Children’s Hospital for a bone marrow transplant. The idea is, you kill off the blood stem cells, including the cancerous ones, and then you replace them with the transplant.
I was there for five and a half weeks, and I was like, I’m not spending Christmas in hospital, no. And I did get home for Christmas, but afterwards I got a fever and had to go back to Sheffield. That’s when we found out that the transplant hadn’t worked.
There was nothing else the doctors could do. For me, I don’t think it really sunk in at the time. But for Mum and Dad, it was hard. Mum says nothing was harder than not having hope.
She and Dad started looking everywhere, trying to find out if there was anything at all that could work, if we could go to other countries. They were looking at remortgaging the house and things. And they kept on hearing about CAR Ts – that’s when you change T-cells so they kill cancerous cells – and how they can work when bone marrow transplants fail. But they soon realised it only works for B-cell leukaemia, because if you make T-cells attack T-cells, they just kill each other.
Then my consultant from Sheffield heard about a trial Professor Waseem Qasim was organising. He was using CRISPR base editing to change the CAR T-cells so they don’t look like T cells anymore and so don’t kill each other. And my consultant was like, my patient might be a really good fit. That’s when we went down to Great Ormond Street to meet Professor Waseem and Doctor Robert Chiesa, who ran the trial.
Mum and Dad weren’t sure about me doing the trial. They were worried it wouldn’t work and I’d spent my last weeks in hospital in pain, when we could do stuff like going to Disneyland instead. But they let me make the decision.
I was like, I’m doing it. If it’s not gonna help me, it’s gonna help someone else. I was 13 then, I hadn’t really had a chance to do anything, I wasn’t leaving behind anything, I’d had no impact. So it was a way for me to take control of something that I hadn’t been in control of for such a long time, and to try to make a difference for someone else, even if it didn’t work for me.
I had two weeks of conditioning in hospital before I had the CAR T-cells. We had some camera crews film it; it was really amazing. A week later, Dr Chiesa told us they’d multiplied. It was the first sign it was working.
Everybody at Great Ormond Street was so great. I made a friend even though we didn’t meet each other for two months, we just texted, and got the nurses and the play specialists to put stuff on each other’s windows. And I had another friend who was next door to me, but unfortunately she wasn’t able to have a bone marrow transplant, so she passed away.
After four weeks, they tested my bone marrow, and there was nothing there. There were no blood cells to detect. Two weeks later, there was still nothing there, so we went ahead and did my second bone marrow transplant, to replace the blood stem cells.
The hardest part was going home. In the hospital, there was almost always someone around that you could talk to. But then when I went home, I wasn’t allowed out of the house in case I caught something, and I wasn’t allowed to see any of my friends. Mum started going back to work, so it was just me and my dog Holly for almost a year.
I’m still in remission, but not everything is resolved. My thyroid is underactive, but that’s because of all the chemo, not because of the CAR Ts. This is why it’s so important to keep pushing it, so maybe someday people won’t have to have this intensive chemo and can go straight on to have CAR Ts.
I turned 17 in January. I’m doing my A-levels and learning to drive now, which is a bit scary. I want to get a degree apprenticeship in biomedical science. If I can do half as much for someone as the treatment did for me, it would be amazing.
I also get to go to conferences to talk about my experience. At one of them, we met Professor David Liu, who developed base editing. I actually cried when I met him. The video’s quite embarrassing.
I’m so pleased and privileged to have the opportunity to go and do these things, and talk about why science is so important, and why research is so important. Without it, I wouldn’t be here.
As told to Michael Le Page
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