Two little boys with Down Syndrome will watch Norwich Castle and Norwich City Hall turn yellow and blue in their honour
PUBLISHED: 08:15 21 March 2017 | UPDATED: 08:34 21 March 2017
Archant Norfolk 2017
Eli and Mason and friends are celebrating Down Syndrome Awareness Day today.
Eli and Mason are best friends. Eli loves pretend-play, train sets and climbing, Mason loves music and singing, and both boys are adorable, and adored.
They also have Down Syndrome, an extra chromosome in their genetic make-up which makes everyday life more difficult and childhood milestones harder to achieve.
There have been difficult days for their families since the boys were born, but mums, Emma Taylor and Zoe Lee, are always keen to focus on the joy the two two-year-olds bring.
Next Tuesday, March 21, is World Down Syndrome Day and Eli’s mum, Emma, said: “The plan is for us to meet outside City Hall with many of our friends from the Norwich and Norfolk Down Syndrome community to celebrate our awesome children together and to raise awareness of awesomeness!”
Emma and Zoe have arranged for the Castle and City Hall to be lit up in blue and yellow from dusk, the colours symbolising Down Syndrome awareness.
Best buddies Eli and Mason were born just a couple of months apart, and live just a couple of miles from each other, in the north of Norwich. They see each other almost every day and also have friends much further afield, as they share a Facebook page, charting some of their day-to-day adventures and achievements. Their mums believe it is the only page devoted to two young friends with Down Syndrome and helps their families reach out to people all over the world.
Emma and Zoe met in the school playground where their older children were in neighbouring classes. A close friendship quickly developed between the two women, and their babies. Eli lives in Sprowston with parents Emma and Chris and big brother Logan, while Mason lives with parents Zoe and Steven and big brothers Brandon and Jayden.
Both families only discovered their babies had Down Syndrome after they were born.
For Emma, it had been a difficult pregnancy. A routine scan had shown up a minor problem with the baby’s heart and then a much later scan suggested the baby had fluid on his brain. Emma and Chris were offered a termination. But they knew they wanted their baby to survive. He was was born three weeks early and rushed into special care. After a tense 12 hours, Emma and Chris, were overwhelmingly relieved to learn that the fears about fluid on his brain were unfounded. But then doctors asked whether baby Eli looked like his big brother, Logan.
Zoe faced almost the same question when Mason was born, the doctor asking whether she had noticed that Mason looked different to her other sons.
Blood tests confirmed both babies had Down Syndrome.
For Emma the overwhelming reaction was relief that her baby was going to survive, but there were worries too, for both families. Their new babies had heart problems and learning disabilities, but asked what have been most difficult things to cope with Emma said: “The hardest thing is dealing with negativity and patronising comments. Lots of people tell us they are ‘sorry’ but we’re not so why should they be?!”
They also struggle with the impact of seeking the help to which the boys are entitled.
“These forms always end up highlighting the things the boys can’t do or haven’t achieved yet, rather than focusing on the positive things that they can do or have achieved,” said Emma. “Sometimes it feels like we are fighting a constant battle so the boys get all the support and help they need to achieve their full potential and be the best that they can.”
Emma and Zoe help each other through difficult times, but there is plenty of joy to share too.
Eli is beginning to speak in short sentences, as well as communicating in simple sign language, and Mason has learnt to climb, speaks a few words and loves performing the actions to songs.
Eli’s current favourite game is looking after a doll. “He has a ‘baby’ which he takes care of, changing her nappy, giving her milk and rocking her to sleep,” said Emma. “He also has a kitchen and loves making us all dinner, especially soup.”
And he enjoys stories, playdough, water-play and visiting soft play areas. “He loves to climb and run and generally have freedom!” said Emma.
And Mason? “Mason loves singing and all music. He enjoys being sung to and loves holding hands whilst you sing, he loves books and sitting in his book corner, and his iPad, and when we are out and about he loves meeting people,” said Zoe.
The boys also love the pre-school play and learning sessions they both attend.
In short, they enjoy doing exactly what most two and three year olds enjoy. And many of the challenges will also be familiar to all parents. “Eli is a typical toddler and doesn’t like to be told no!” said Emma, and Zoe added: “Mason isn’t keen on very loud noises or being in a very busy environment.”
When asked for advice for parents who have just discovered that their baby has Down Syndrome, Emma said: “We would congratulate them on the newest member to their family. We would say that their baby has a bright future ahead of them, as any child does when they are first born, and encourage them to enjoy every moment and milestone with their little one.”
But she continued: “We would tell them that Google is not their friend and to ignore people who often mean well but can make ignorant or tactless comments. We would tell people that Down Syndrome will be part of their lives but won’t become their life, and will never define the tiny human they have just made.”
However, they are hoping both boys will love the excitement of celebrating World Down Syndrome Day and seeing Norwich City Hall and Castle lit in blue and yellow.
“We hope to raise awareness for that little added extra of awesomeness!” said Emma. “We want people to know we are proud of our little boys and show solidarity to those who support and love us. We want people to recognise that Down Syndrome is not something to be hidden away as it was in the past, but can be celebrated and recognised.”
In common with all parents, they worry about what the future might hold, but Emma said there is plenty to look forward to too: “We hope that both boys will become the very best they can. We want them to enjoy their lives and be happy and healthy. We want them to be able to achieve everything that they want to and live it to its fullest. We want them to become as independent and confident as they can,” said Emma.
Join Eli and Mason outside Norwich City Hall from 5pm on Tuesday, March 21. They will be with many of their friends from the Norwich and Norfolk Down Syndrome community to see City Hall and the Castle lit in blue in yellow, from dusk. There will also be blue and yellow helium balloons to add to the festivities.
Follow more of Eli and Mason’s adventures on their facebook page bestbuddiesandtheiradventures
World Down Syndrome Day is on March 21 – the 21st day of the third month – to signify the triplication of the 21st chromosome.
This extra copy of the chromosome causes Down’s Syndrome.
Two babies with Down Syndrome are born every day in the UK.
In Norfolk the celebrations include lighting up the Castle and Norwich City Hall - and families will also be raising awareness by wearing special Down Syndrome Day socks.
Dr John Langdon Down first identified the syndrome in 1866. People with Down Syndrome have varying degrees of learning difficulty and a number of physical characteristics in common.
Down Syndrome Norfolk is a group for people with Down Syndrome and their parents and carers. It runs The Young Down’s Group for babies and young children, and their families, which meets at the East City Children’s Centre, Duckett Close, Norwich, from 10am to noon on the first Saturday of each month.