How positive attitudes are changing the perception of Down Syndrome

World Down Syndrome Day

World Down Syndrome Day is celebrated on March 21. - Credit: Harry Fitzsimmons/Emma Taylor/An Howell

To mark World Down Syndrome Week, community content specialist Sarah Ravencroft has spoken to several families and Norwich City Football Club's Down Syndrome team to raise awareness of the condition.

World Down Syndrome Day is celebrated on March 21 every year to advocate for inclusion and rights for people with the condition. This kickstarts World Down Syndrome Awareness Week.

Down Syndrome (or Trisomy 21) is a chromosomal condition. It tends to occur when a person has three copies of chromosome 21 in each cell instead of two.

Down's Syndrome Association, a registered charity, advocates for inclusion with their message: "We're all missing out if everyone isn't included. Let's celebrate how inclusion improves life for all of us".

Emma's Story 

Emma Taylor's seven-year-old son Eli was diagnosed with Down Syndrome or as his family like to call it 'that little added extra' . In her own words, Emma, from Old Catton, has shared her story. 

At 37 weeks pregnancy, I was offered a termination due to concerns about Eli’s health. Eli arrived in a hurry; less than 12 minutes of labour and born upside down. He decided to make a grand entrance and has lived his life to the fullest ever since! 

Eli Taylor

Eli Taylor, who was diagnosed with Down Syndrome shortly after birth. - Credit: Emma Taylor

Blood test results confirmed Eli's diagnosis five days after being discharged from hospital. It felt like our whole world had fallen apart. We had no knowledge or experience of Down Syndrome. If we could go back, we would tell ourselves about all of the things we have learnt. Eli having Down Syndrome is just a part of what makes him him but it doesn't define him. It just adds to his uniqueness and aren't we all unique in our own way? 

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We pretty much gave up hope of any kind of 'normal' life for Eli and for our family, we were ignorant and naive. The stereotypical views of people with Down Syndrome are that they are not very clever, they will not amount to much, and the one Eli loves to disprove over and over again is 'they're always happy'. Trust us, he can strop and throw a paddy like the best of them. I'm ashamed to admit these were our ignorant misconceptions at first too.  

We’ve met a lot of families with children who have Down Syndrome, they have become our friends and help make up our support network. We wouldn't have dealt with Eli's diagnosis so well without the support from Down Syndrome Norfolk. 

I began a Facebook page, 'Best Buddies and their Adventures' with my friend Zoe Lee, mum to Mason to honestly share our experience of raising children with Down's Syndrome. Sadly, our experiences have included so much negativity, fear and ignorance and that a lot of people feel sorry for us and our boys, quite often we are given the apologetic look.  

Eli Taylor

Eli Taylor pictured with his mum, Emma, older brother Logan and dad Chris. The family hope to raise more awareness of Down Syndrome. - Credit: Emma Taylor

Eli is a determined, strong willed, funny, cheeky and a pretty amazing little man. He loves dinosaurs and Fireman Sam. He loves to run and climb, he literally has no fear, his favourite games are ‘policeman and thief’ and ‘hide and seek’. He likes to eat sausages and ice cream and his best friend is our dog Pumpkin. He sounds just like any other seven year old because, well, really that's what he is. He finds some things a little trickier and sometimes it takes him a little longer to achieve his milestones but we just celebrate them even more when he reaches them.  

For the past few years Norwich City Hall and The Assembly House have lit up in blue and yellow for World Down Syndrome Day. We've gathered with friends, family and people from the local Down Syndrome Community to acknowledge the day. It is important for us that the day is marked every year as everyone's differences should be celebrated for the amazing uniqueness they create in us.  

Sadly, over the last few years Covid meant that we were unable to celebrate in person. The Down Syndrome Association has run the Lots of Socks campaign for many years which inspired the colouring page created by my friend Judith Palmer of Alphatogs. When pictured, chromosomes come in pairs that look like socks hanging on a washing line. People with Down's Syndrome have an extra 'sock' or chromosome 21 which makes three little socks. I came up with the Lots of Socks poster trail - for people to spot in windows as they walk around Norwich - as a way of celebrating the day during a time when being together was difficult but feeling united was important.

Eli World Down Syndrome Day

Eli Taylor with lots of odd socks to raise awareness for World Down Syndrome Day - Credit: Emma Taylor

Our wish for Eli is that the world changes their perception of Down Syndrome. That he is able to grow up in a world where there is no judgement, no stigma and where he can be entirely confident being himself, the amazing dude he is!  For us there are no labels, no one size fits all, no boxes that we can all be squished into. We are trying to change the world ever so slowly and with just one small step at a time. 

An's Life with Sammy

An Howell, from Belton, shares her story of life with her grown-up daughter Sammy.

When Sammy was born, way back in 1974, I knew nothing about Down Syndrome or what to expect as she grew.  The prognosis I was given when told about her condition was bleak, Down's Syndrome wasn't even the terminology used by the doctor when he informed me of her condition.  I remember him being lovely and he was only telling me what was believed at the time.  It was scary though to be told that your beautiful baby girl would most likely never achieve much, was unlikely to live much beyond her twenty fifth birthday and was likely to have behavioural issues that would mean I would be unable to continue caring for her at home.

An Howell Sammy

Sammy enjoying a walk along the coast. - Credit: An Howell

Now nearly forty eight years on, I am so glad to be able to say that none of this came true, Sammy is doing great.  She continues to live a varied and full life and although she may not achieve in the way the world sees achievement she's made huge steps throughout her life. Believe me, when it comes to sweeping a garden or a yard Sammy is second to none she gets it spotless and takes great pride in her work.

Currently, out of choice, Sammy lives at home with me. After finishing school, she did go away to a Mencap college in North Wales where she thoroughly enjoyed herself as she learnt how to live more independently.  Since finishing college, Sammy has done a range of different things including having a paid part-time job in the kitchen at Pizza Hut and travelling independently on the bus to and from a supported work placement with this including having to change buses. She now very much enjoys the time she spends as a farm helper at the wonderful Clink's Care Farm where she helps with the animal care and welfare, as well as being engaged in many other areas of farm life.  She also enjoys a lot of the regular things that other people do such as spending time with family, going on holidays, going out for coffee, savouring a glass or two of wine and other such things.

Sammy Howell World Down Syndrome Day

Sammy Howell working on Clink's Care Farm. - Credit: An Howell

Each and every person who has Down Syndrome is an individual with their own likes, dislikes and personality and I have learnt so much over the years from this woman who I am extremely proud to call my daughter.

Rebecca's brother Rory

Award winning blogger, Rebecca Fisher, has three children of her own and became an advocate for Down Syndrome following the diagnosis of her younger brother.

Rebecca Fisher Rory

Rory with his older sister Rebecca Fisher - Credit: Rebecca Fisher

My life with my little brother, Rory. Where do I begin? Rory came into my life in 2015 and it is like he has always been there. He is only 7 years old but he is the bravest and most courageous little boy I have ever met.  Life with Rory is never boring.  He makes me laugh and cry! Mostly crying with laughter though. Down Syndrome is nothing to be afraid of. We wouldn't change him for the world!

Get colouring to show support

WDSD 2022 colouring page

The World Down Syndrome Day 2022 colouring page is available to download here for free. - Credit: Judith Palmer, Alphatogs

The colouring page can be downloaded for free here. You can share photographs of your finished pictures here.

Norwich City Football Club's Down Syndrome team

Norwich City Community Sports Foundation run weekly football sessions for people of all ages with down’s syndrome at The Nest, their community hub in Horsford.

The sessions take place on a Saturday morning and help to build confidence and social skills as well as keeping the players active and healthy.

The players have also enjoyed watching Norwich City play at Carrow Road, and have even taken part in a half time pitch parade.

NCFC Down's Syndrome

Norwich City Community Sports Foundation run weekly football sessions for people of all ages with down’s syndrome at The Nest in Horsford. - Credit: Harry Fitzsimmons

Alex Fearne has been part of the sessions for a number of years, and has also spent time volunteering at The Nest with the grounds staff.

NCFC Down's Syndrome

Alex Fearne with his dad, Andrew, at The Nest - Credit: Harry Fitzsimmons

Alex finds it difficult to communicate, but the friendly and welcoming nature of the sessions means that he looks forward to joining in every week.

Alex’s dad Andrew said:

“The team at the Foundation play such an important role in keeping Alex active and engaged with his peers, and for that we can’t thank them enough. We see and feel the benefit every week.”

On Saturday the team were visited by a group of fundraisers who will be taking on the Canaryball Rally in April, driving over 1,500 miles around Scotland and back in just five days.

NCFC Down's Syndrome

Members of the team were visited by a group of fundraisers who will be taking on the Canaryball Rally in April. - Credit: Harry Fitzsimmons

The rally team joined the end of the football session, meeting some of the people their fundraising adventure will support.