A five-year-old with Downs Syndrome is helping to raise awareness of the condition for World Down Syndrome Day.
Ellery Lawrence is a pupil at Clifton All Saints Academy, and to mark the day on Tuesday, pupils will be wearing different socks, and be presented with a letter from Ellery himself.
Put together by his mum Sally, the letter describes Ellery’s difficult start in life but also the profound effect he has on all those who know and love him.
It says: “Hello!! My name is Ellery, I am in Robins Class and I have a Super Power! Mummy says my Super Power is called Down Syndrome and that it means I have the ability to make even the grumpiest of grumpy people smile.
“I was born in January 2012 at Lister Hospital, Stevenage. Mummy thought I was going to be a girl, Daddy thought I was going to be a boy, but neither of them knew I was going to be a Super Hero!
“When I was born the doctors told Mummy and Daddy that I had Trisomery 21, the medical term for Down Syndrome. At first they were very sad and scared, I don’t know why; I mean have you met me?! What’s to be sad about!!
“When I was 5 days old the doctors checked me over, there are lots of things that people like me can be more at risk of like thyroid problems, hearing and vision problems, digestive problems, congenital heart defects and increased risk of infections such as pneumonia.
“They told Mummy and Daddy that I had a big hole in my heart and that I would need surgery to fix it. This time Mummy and Daddy were really scared. I was really poorly for the first six months as my heart was very weak and I had to be fed via a tube that went up my nose and all the way down to my tummy because I didn’t have the energy to feed normally.
“In May 2012 I had open heart surgery and the clever doctors at the Royal Brompton managed to fix the hole. At six months old I weighed 7lb, but after a long recovery I finally started to gain weight and grow stronger. Since then I have been growing big and strong,
“I have hypermobility which means my muscles are super flexible and it took me a lot longer than most children to be strong enough to walk, but I practised really hard and took my first steps in February last year.
“Now look at me!! I can almost out run my Mummy!!
“I have lots of appointments with clever people like my heart doctors, eye doctors, hearing doctors, speech and language and physiotherapy practitioners.
“I am now a big 5 year old who loves trains, cars, riding my scooter, playing football and jumping in puddles.
“I love coming to school and playing with my friends in Robins.
“I learn all the same things as them, but need a little extra help with the tricky stuff. I can talk but sometimes you might find me difficult to understand because I am still learning to speak clearly, I also use sign language, a mix of Makaton and BSL, to help me tell the adults and my friends what I want, you know the important stuff like ‘biscuit’ and ‘chocolate cake’!!
“Down Syndrome is what makes me different, it doesn’t define who I am, I am not a ‘Downs kid’, I am Ellery.”