Hello, my name is Harry, I am 11 years old and have CMN. It covers 80% of my body.
It was quite a shock for my mum and dad when I was born as they had never heard of CMN, but a few days after I was born a doctor told my mum and dad all about it and referred me to Great Ormond Street Hospital to meet with Prof Kinsler. Prof Kinsler put us in touch with Jodi from Caring Matters Now and we were given lots of information. We also attended a couple of the gatherings where I got to meet other kids with CMN and even got to be on TV for children in need.
Over the years I’ve had 8 surgeries to remove some troublesome special skin which sometimes gets infected or didn’t look healthy and thankfully I’ve also been ok.
My mum and dad have always called my CMN “special skin” and one of my friends once asked what was wrong with my skin and when my mum told her I was special she replied, “well I’m special too”. This made us all laugh. I also assigned a part of my special skin to my mum and dad which they had tattooed, my dad was the back of my neck and for my mum my shoulder.
I used to be a little shy about my skin but as I’ve gotten older, I really don’t care and I show my CMN with pride. I’ve always had a good group of friends around me inside school and outside that’s made me feel confident.
My skin can tear really easily, so I have to be careful when playing sports or downhill riding. It doesn’t hurt any more than normal and being a little bit wild (like my mum says)… I’m pretty used to it!
I started Year 7 this year and although I was a little worried, it’s been pretty good. So far, I’ve only had one boy saying means things but my school have been really good with supporting me. My teachers are all great with making sure I have my sun cream on.
I started doing motorsport last year learning how to drift. As the year has gone on, I’ve been given some amazing opportunities like competing against 39 of the best European pro drivers and the current drift masters champions. I’m now considered the youngest UK competing drifter and last week came away with 2nd place for the winter battles series.
I love being at the track, it’s like one big family and all the “big boys” (adult drivers) look out for me and are always there to help me. I think it’s because I have special skin that people remember me more easily which has helped me to build more bonds with people.
I really hope that I can one day become a professional drifter and I hope that I can raise awareness for people that don’t know about CMN.
My best advice for anyone with CMN would be to be yourself and do whatever it is that you want to do… the sky is the limit. I’ve never let my CMN stop me from doing anything, from swimming to rugby and now race car driving!
Read more here about Harry and his family, and how they won the Jessica Ma Award in 2022.
