20 Years Ago…
When I was born, my parents didn’t know there was anything different about me. And it took a long time for them to get any answers. It was by chance that a trainee doctor happened upon my mum in a hospital waiting room (as she had been for the past 18 months, back and forth, trying to get a diagnosis, being side-eyed for having a baby with bumps and bruises and scars), and fresh in his mind from studying, he knew instantly what condition I had. Congenital Erythropoietic Porphyria. Sounds scary. And the doctors didn’t make it sound any less terrifying. They told my parents I had a life expectancy of 10 years. Keep me away from bright lights, never take me outside, separate me from my sister and any other children, and enjoy the time you have.
Thankfully, my mum took none of their advice and fought for me to have the most normal life I could. 18 months later, I had my first blood transfusion. It was a steep, uphill battle, but by the time I was 5-years-old, my mum had found a good relationship with doctors, and I was being seen regularly by Dr. Norfolk and Dr. Holland. Still, the diagnosis of a short life plagued my mum’s thoughts, and any long term solution for treating the porphyria was put off. It wasn’t until I was around 9-years-old that my mum and doctors started having discussions about giving me a Bone Marrow Transplant. It took a further five years for this to actually happen.
On the 16th March, 1999, I went into hospital and didn’t see the outside for nearly three months. I had to have chemotherapy, and my sister donated her bone marrow to try and cure me of my condition. I very nearly almost died. There was a point when my family were brought aside and told to make the most of the time I had left. My sister told my friends at school, and she remembers hugging them and crying. Of course, I don’t remember any of this. The parts I do remember are all jumbled up and out of order. One moment that really sticks out in my memory is when Jill Dando was murdered and there was round-the-clock coverage on the news. Basically, TV had become my best friend. My stepdad would record lots of home footage of my sisters and dog so that I could see what was going on at home. But I found it too difficult to watch. I was separated from my family, and my friends. The nurses in the BMTU became my friends. Angie is still someone I remember fondly to this day. She would create word puzzles for me, and we would play the numbers game from Countdown. This was obviously when I was getting better, but in actual fact I wasn’t getting better. Turns out, the bone marrow transplant had failed. In my diary, I wrote that I didn’t mind, that I liked having something special about me, and that’s still the truth to this day.