Alfie's CGD Story

My story with CGD starts from early on. I was born with a large red rash which signaled to the doctors that something was wrong. Soon after that happened, as far as I’m aware, my blood was tested for CGD. This then also meant that my brothers needed to be tested, and one of my two brothers also had CGD. 

Growing up with CGD

I was sick a lot and didn’t get to go on many trips with school or go out with my friends. This made it hard to make friends and socialise, but to also keep up with the rest of the kids educationally. I wasn’t able perform too well on my sats tests at the end of primary school, and when I got into secondary school it only made it harder to do well.  

I had to get motivated about things I wanted to change in my life to get to where I am today. So, in year 10 I became fully committed to changing my life. I started to do more revision and soon worked harder than anyone else in my school and my GCSE predicted grades changed from 3/4s across the board to 7/8s in a year. This then enabled me to get into sixth form to do A-levels. 

Moving on to A-Levels

I would say A-levels is where I decided that science was the subject for me because I wanted to help people going through a BMT (bone marrow transplant). I am now aware what science can do for people, so again I worked hard and got into university to study Biochemistry.  

I have my BMT the day after my 9th birthday, I’m now 19 so 10 years have now passed. As a child, I remember it as a fun trip away from school, but then as it got into more of the isolation part of the treatment where the chemotherapy started, I got angry and wanted to go home. 

This isolation affected me. However, I wasn’t truly alone as I was with kids who were going through similar treatments and made friends with them. I just remember shouting at my poor mum and the nurses at the time when I was fed up with everything.

As a child you don’t really understand what’s going on or why the doctors and nurses do what they do, so having the Hickman line and the peg put in (one for medicines and one for a milky solution of nutrients) was a very odd experience for me. You don’t expect to lift your shirt and see wires and tubes coming from outside of your body, but my mum reassured me it was ok, and the doctors and nurses were ever so lovely and explained it to me as well as you can to a child. 

After the Bone Marrow Transplant

The aftermath of my BMT meant I could only go to school for short periods and the rest of the time I was at home, it was hard to fit back in at school as all kids around that age are very active. Due to the treatment, I couldn’t be active, so it was difficult. However, I’m still here to talk about the BMT so I’m extremely grateful for its success. 

I did have a lot of mental health struggles, which stemmed from the BMT. I was isolated from all my friends, which made it hard for me to socialise and made my anxiety worse. However, I have had a lot of help with this and now make friends very easily. I still do get anxious sometimes, but I have been given techniques to help me. 

I really do have to mention my mum in this story, though, as I respect and love her so much. She was with me for most of my hospital visits, took care of me when I was ill, and when I was having my BMT as I was in hospital for a long time. My Mum was with me every night and day.  

I truly cannot put into words how much stuff my mum has done for me, and I probably wouldn’t be here if it wasn’t for her.