My name is Dylan, I’m 17 years old and this is my story.
Fourteen years ago, I was a normal baby boy living with my mum in a flat in the east end of Glasgow. Normal is chubby cheeks and soft fluffy hair. Normal is playing with toy cars and making enormous traffic jams with them.
Then one day people started staring and asking my mum questions: “Is he ill?”, “Does he eat all of his food?”, “Has he grown?” My mum began to feel annoyed and uncomfortable. She just wanted to enjoy her baby boy.
As time went on, I lost the fat on my cheeks, arms and legs, I lost my hearing, I couldn’t close my eyes, and I couldn’t walk barefoot. I was diagnosed with a condition called MDP Syndrome. MDP stands for mandibular dysphasia with deafness and progeroid features. It is only known to affect myself and 13 other people in the world!
When I started school, people would laugh and stare and say, ‘‘What’s wrong with him?’’ I found it hard and challenging to make friends, which made me really upset. I felt trapped in a bubble all on my own. I decided to share my story with my class, so they could understand me and my condition better.
After my talk, my classmates were really interested to learn more and started asking questions about MDP Syndrome. There was one girl who wanted to be my friend after I gave my speech. She was very nice and kind. The whole experience made me feel happy and proud of myself.
As I got older and left for high school, things got harder. There were more people and it was a bigger building. I was so scared starting high school as I didn’t have any of my old friends there. I was also diagnosed with autism, which meant it was even harder to talk to people.
Over a couple of years in high school, I did more speeches to my classmates. It helped to educate people about MDP and learn more about me. I was thankful for all the support everyone gave me, and I started to accept my visible difference more and make new friends.
My confidence has definitely improved over the years, but it still gets to me when people stare or make comments. Sometimes I’ve cried about the hurtful things people have said, but it doesn’t affect me as much as it used to. I know I am strong, and that these people are not worth worrying about.
I have learned it’s ok to be different. Different is amazing, different is a gift. It may have changed my life and been difficult at times, but it hasn’t stopped me from living life. I have used Instagram to make friends and to share my story and to spread kindness and positivity because it’s what the world needs the most.
Now I love to help other people in my school and help them realise that it doesn’t matter who you are, anything is possible. I try to talk to lots of people in my school, especially the young pupils, to make sure they’re happy and doing well.
I missed being at school during lockdown, but there were some positives. I went on BBC Radio Scotland to talk about my experiences during the pandemic and it made me happy because lots of other people heard it and were inspired by my story.
My advice to anyone with a visible difference is to always be yourself and do things with your friends and family that makes you happy and take your mind off the hard times. I know that living with a visible difference can be tough and not many people understand what it’s like but remember there is always a family member or charities like Changing Faces who can help you.
This is a poem I wrote about my experiences:
We are not all born the same, how boring the world would be, being different is the best thing, makes us a lot more free. There are some that are very different, disabilities here and there, they are still human beings, treat them equally and fair. Everyone is affected differently, can be mild to severe, still don’t hesitate to say hi, no need to live in fear. Don’t refuse to get to know someone, we shouldn’t have a set view, regardless of their diagnosis, they’re still just like you.