Shining a light on Down Syndrome

Kian Long, 7, pictured with his dog Charlie.Picture: ANTONY KELLY

Kian Long, 7, pictured with his dog Charlie.Picture: ANTONY KELLY - Credit: Archant

It's World Down Syndrome Day on Wednesday, March 21, and families in Norfolk are raising awareness of the joys and challenges of bringing up a child with an extra chromosome and extra needs.

Best friends Eli Taylor, right, and Mason Lee have been best friends since they were babies. Picture

Best friends Eli Taylor, right, and Mason Lee have been best friends since they were babies. Picture: ANTONY KELLY - Credit: Archant

•On Wednesday, March 21, Norwich Castle and City Hall will be lit in blue and yellow, to symbolise Down Syndrome awareness. People with Down Syndrome and their friends and families will celebrate with banners and balloons at the Castle entrance at 6.30pm.

•World Down Syndrome Day is on Wednesday, March 21 – the 21st day of the third month – to signify the triplication of the 21st chromosome, which causes Down Syndrome.

•Down Syndrome Norfolk supports 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 on the first Saturday of each month at the East City Children's Centre, Duckett Close, Norwich.

KIAN loves swimming, playing with friends, going on his i-pad - and dancing gangnam style.

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Seven-year-old Kian Long has Down Syndrome, but does not let that get in the way of a fun-filled childhood – although there are plenty of challenges alongside the fun. 'He also absolutely loves playing with water and bubbles,' said his mum, Chrystal. But he has little idea of what should not go in water, and Chrystal said: 'We have lost items. In developmental terms he's like a toddler.'

Kian also tires easily, often needing to use a wheelchair outside, and has very limited spoken language.

Chrystal, who now helps run a group for the families of children with Down Syndrome, did not discover Kian was affected until after he was born.

'I had the blood test during pregnancy and it was one in such a high number, maybe 2,000, and I was young, that I didn't give it another thought and got on with my pregnancy,' she said

But Kian was a one-in-thousands baby.

When he was born he had an umbilical hernia so he was taken away to be checked. 'The consultant came back to say they were happy with the hernia and he could feed, but they thought he had Down Syndrome,' said Chrystal.

It was a huge shock for the family.

Kian also had holes in the heart, but they were small enough not to need surgery. 'In terms of his health we are very lucky,' said Chrystal. 'After about five days the Down Syndrome was confirmed with a blood test. In some respects I felt most worried about his life expectancy. But I just thought this is who he is and we need to get on with it and deal with it.'

Chrystal and her husband Alan, who live near Norwich, also have two daughters, nine-year-old Katelyn and three-year-old Temperance.

When Chrystal was pregnant with Temperance she became very aware of attitudes to Down Syndrome. 'You get all this information on Down Syndrome, as if it is the worst thing that could happen,' she said. 'I didn't have any tests because I knew I would carry on with the pregnancy. The only thing I worried about was that she would get here safe and well.'

'As a family you become more aware of other people around you with different disabilities and you become more accepting and understanding and compassionate. You enter this different world. There are all these Facebook groups and if you have got a problem there is someone else you can ask, sometimes you get children who become very poorly and pass away and there are hundreds and hundreds of messages of support.'

Having friends and family around is very important to Chrystal. 'It's someone who will take the time to have Kian for a couple of hours,' said Chrystal, who loves dancing. 'My friends I dance with are very, very supportive.'

Friends are important to Kian too. He loved his local mainstream nursery and infant school and is now settling in at a specialist school where he enjoys cooking, PE and horse-riding.

'When the children are babies people say they look so beautiful and then they get to their teens and beyond and people almost shy away. But a person with Down Syndrome is a person first,' said Chrystal. 'People say, 'Oh, they are very loving,' and I say, 'Yes, Kian can be, but not always, not when he's in a bad mood!'

'And no parent wants to hear you say you're sorry about their child. Things can be difficult, but they can be difficult with any child.

'For the future I just hope that he can be as independent as possible. We have got him walking, we hope to get him talking more.' Battling to get Kian speech therapy has been one of Chrystal's biggest challenges.

'And as we get older it's making sure he has a support network around him. He's got his sisters and hopefully they will all stay close and he'll have that friendship.'

Three-year-olds ELI and MASON are best friends, sharing adventures and achievements.

Their mums have also formed a close friendship, bonding over the joys and challenges of bringing up boys with Down Syndrome.

And their advice for anyone just learning that their new baby has Down Syndrome is upbeat.

'You can do it! You are about to have an amazing little human that will love you unconditionally,' said Emma.

Her son, Eli, loves climbing, running and playing outside, and is a bit of an expert on dinosaur names. Mason loves nursery rhymes, singing, books and playing with family and friends.

Mums Emma Taylor and Zoe Lee set up the Facebook page bestbuddiesandtheiradventures when the boys were babies. 'We would like to show people that Down Syndrome is not as negative or scary as most people make out to be. For us it is the same as raising any other inquisitive child, we have highs and lows as all parents do. That's what you sign up for when you have a baby,' said Emma.

'We celebrate every stepping stone as if it was a milestone! It's also a huge reward to see how their brothers care for them.' The two families live in north Norwich and Emma and Zoe met in the school playground where their older sons were in neighbouring classes. Both Emma and her husband Chris, and Zoe and her husband Steven, only discovered their babies had Down Syndrome after they were born.

For Emma, it had been a difficult pregnancy and her initial reaction was overwhelming relief that her baby would survive. But Eli and Mason had heart problems and a diagnosis which meant life-long learning disabilities. 'We are constantly chasing professionals to ensure the boys have the best opportunities that they can,' said Emma.

Her current challenge is behaviour. 'Eli is very strong willed, he likes to be in charge, which at the age of three is not really going to happen!' she said. 'And I think we both wish we had eyes in the back of our heads! We can't leave the boys alone for a moment without mischief ensuing!

'It's great to see Mason and Eli achieve things that most people take for granted, such as talking, walking, interaction. Everything they do and overcome is a great success in our eyes.'