Living with the daughter ‘who fills our family life full of joy’

Jonathan and Allison Robinson with daughters Emily and Lucy.
Jonathan and Allison Robinson with daughters Emily and Lucy.
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Jonathan and Allison Robinson were months into their pregnancy when they were first told there could be complications with their baby.

And when Emily was born in 1996, doctors diagnosed her with Down’s Syndrome.

Twenty years on, the couple, of Lofthouse, Wakefield, have spoken of the joy their daughter has brought to their family, following the airing of BBC 2 documentary ‘A World Without Down’s Syndrome?’.

Mr Robinson, a pastor at the New Life Christian Centre, said: “When we first had Emily, it was a massive shock and we wondered if we could cope.

“We went through a month of a kind of grieving and thinking how life would be for us as parents and for her too. But she has been nothing but a joy to us and as a family, we have all been on an amazing journey.”

The Down’s Syndrome documentary, shown on October 5, explored the ethics around medical screening for the condition. Mr Robinson said: “After watching that programme, I wanted to add our story to it and say what children with Down’s Syndrome can add to your life.

“I understand how people can be very overwhelmed by Down’s Syndrome and how difficult it can be.

“But in our experience, Emily has been nothing but a delight and encouragement.

“She is a very bubbly and lively person. And socially, she’s very advanced.

“I have learned more through Emily about myself and to us as a family, she has brought a new perspective to life that we would not otherwise have had. We are very grateful and appreciative of things that perhaps other people might not be.”

Mr and Mrs Robinson, who live with Emily, 20, and their younger daughter Lucy, 18, were offered amniocentesis testing during pregnancy, to indicate whether Emily had Down’s Syndrome. But they decided to turn it down.

Mr Robinson said: “At the end of the day, everybody has a difficult decision and we would never stand in judgement on their choice. Me and my wife went through that decision with Emily and we personally would not choose anything different for our lives.”

Mrs Robinson added: “It is important to understand that although we have a positive view on this, we do know life for some people can be extremely difficult.

“It takes some time to get used to the fact your child has Down’s Syndrome and that not being what you were expecting but actually just because it is different doesn’t mean it is bad or the end of world.

“It has been tough in many ways and her behaviour has been very difficult at times but you could get that with any other child and there is lots of support out there.

“We have had so many positive times. Emily has brought us a lot of joy over the years.”

Down’s Syndrome

Around 775 babies are born with Down’s Syndrome each year in England and Wales.

The genetic condition typically causes some form of learning disabilities.

The BBC 2 documentary, led by Sally Phillips, explored life with Down’s Syndrome, current screening and testing policies and the ethics surrounding them and a proposed new screening test for Down’s Syndrome, which could become available on the NHS.

More information about the condition, and the support networks available, can be found by visiting www.downs-syndrome.org.uk