‘We lived in fear and hope’ - Noreen reflects on five years since her daughter’s stem cell transplant

October 27, 2020
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Today marks 5 years since Ayesha’s stem cell transplant. A few weeks ago she turned 16. Her life is full of friends and homework and Tik Tok and horseriding - something she dreamed of doing when she was first diagnosed with leukaemia, at seven years old.

For many years her family lived in fear and hope while they waited for a suitable stem  cell donor. Because Ayesha is from a minority ethnic background, her chances of finding a donor were much lower, so her family campaigned tirelessly and added hundreds of people to the stem cell register.

Ayesha found a match and with it, she was given a second chance of life.

Today her mum Noreen is reflecting on how far they have come and how lucky they are. She knows that many more families are in the position that they were. And so, as well as a celebration, she wanted to share their story to give hope to everyone still going through this.

Our life today is so different from our life before. When Ayesha was ill, we never allowed ourselves to look more than six months ahead. As parents, we were scared all the time. We just lived in fear. Fear and hope. It felt like a never-ending cycle. She is fearless though, and always has been.

We waited four years for Ayesha to have her transplant because there wasn’t a suitable donor. I think when you get a diagnosis, there’s an assumption that there is a path to recovery and there is, but for some families it’s a much longer journey.

We found out that if you’re from an ethnic minority background, you have a much lower chance of finding a donor. It’s an extra hurdle you have to get over, to catch up with everyone else. It’s bad enough that you have to deal with your child having leukaemia, but this just adds an extra layer of worry to an already difficult and challenging situation.

Leukaemia is an illness that doesn’t care about equality - that’s why it’s so important that we do, and that people come forward and join the register.

The search for a donor

People just don’t realise the difference they can make. So, we started campaigning.

We wanted to raise as much awareness and money as  possible. We added hundreds of people to register and raised over £200,000. Even if it hadn’t been a successful outcome for Ayesha, I thought, no matter what happens, something positive has to come out of this.

After many uncertain months, we got the incredible news that Ayesha had a matching donor. We felt so lucky, but still fearful. The next part of the journey is scary too. Even after Ayesha’s transplant, the first year was hard. Then you get past the first year, then the second year and you start let go of the fear a little bit, but it stays in the back of your mind.

Five years on

Five years on, we can’t believe it. We look back and we don’t know how we did it. As parents, the thought of what she’s been through it is never far away, but hopefully for Ayesha, it feels so far removed from her life now - which is full of friends and homework and Tik Tok and horse-riding.

The impact that the transplant has had, it’s just the most amazing thing ever. It was hope. That’s what I always say to people about Anthony Nolan - they give you hope, when nobody else can. That’s why we continue to support Anthony Nolan, so other people get that hope. Without Anthony Nolan, we would not be here as a family. End of story.

To anyone going still through this: keep going. Just don’t give up. And stay connected to Anthony Nolan. I always refer to Anthony Nolan as my BFF - that’s how I see them. Best friends for life. It was a long journey but we made it.

You too can help people like Ayesha

A gift of £5 a month helps build a stem cell register that gives everyone the best chance of survival