Patient Story


Tell me about yourself?

I am 16 years old and have always lived in Islington, London which I love. Pre-Covid, I enjoyed meeting friends in town and exploring new areas – maybe going for a bubble tea in Chinatown or climbing Monument for amazing views.  I am studying for my A levels and am hoping to go on to study medicine at university. I live with my mum, dad, and younger brother, but have a very large wider family with lots of aunts, uncles, cousins, and grandparents who I am very close to.

What are your interests and how do you like to spend your free time?

I love cars and plan on taking my driving test as soon as possible – I’m saving up for an Alfa 159 one day. I enjoy playing tennis regularly, as well as badminton, and love going for bike rides with my family to Victoria Park or even the Olympic Stadium – we bought mum a bike for her birthday after her heart surgery but haven’t managed to get her out as much as we would like! At school I founded the science club and run the economics club and in free periods I help in the library and run the school shop.

Personal experiences

Describe your family – How has thalassaemia played a part in your life?

My mum is the one in my family that has thalassaemia – she has thalassaemia intermedia. From a very young age, I remember accompanying her to her many hospital appointments at the old Rosenheim building at UCH and got to know a lot of the staff and nurses there. She’s spent a lot of time in hospital over the years, but she has always tried to make sure that it doesn’t affect what we’ve been able to do as a family, and she has always tried to ensure that her diagnosis hasn’t impacted us. I remember her getting very upset the one time she had to miss one of my primary school plays due to a hospital appointment mainly because I was upset, but she has always made a real effort to do everything that “normal” families do and to be there for me, baking cakes for cake sales, helping out at the summer fair and sports days, and having my friends over. Sure, we might not be able to go on super long bike rides or go trekking in the Amazon, but I’ve never felt that I’ve missed out on doing things.

When did you first become aware of thalassaemia?

Although mum always took us to her hospital appointments and told us what was going on as much as possible, so that we wouldn’t be scared of hospitals, I didn’t really know that she had thalassaemia until about year 5 at school (age 10 or so).

Has thalassaemia impacted your life in any way?

I’d say that until recently, we’ve lived a “normal” life. The trip to the hospital every few weeks was the only real difference, and I remember going on the tube a lot to get there when I was very young. Obviously visiting mum in hospital so much over the years has also been strange, especially once I was doing biology at school and could really appreciate what was going on, but we always got through those tough times with the help and support of family and friends. However, Covid has meant that mum has had to shield and as a family we’ve had to take extra precautions to make sure mum was safe. This has been a big change over the last year and a half, especially compared to other people who haven’t had to be so careful or to shield. I haven’t been able to go out and see friends so much and we’ve been really careful at home, disinfecting and washing hands a lot, especially when we get back from school.

Anything else you might want to say that hasn’t been covered?

I really appreciate the NHS and all that it has done for my mum and our family. There have been a number of close calls and I’m so grateful that because of the doctors and nurses who work so hard around the clock, mum’s still here to keep me on my toes! Watching the doctors and nurses over the years has certainly had an influence on my career choice.

At the haematology department at UCLH (Macmillan Cancer Centre 4th floor), there is a photographic story of my mum and her treatment. The photographer, Tom Smith, came to our house and took pictures in the park of us all, and became a good friend. So, our whole family is famous!