Our real life EastEnders story

FOR one group of mums, a storyline in EastEnders is today tackling an issue very close to their hearts. LISA WOOLLARD asks if the soap's portrayal of Down's syndrome is true to life.

IT was as Sharon Hobbs read her daily newspaper, that a headline about EastEnders leapt out at her.

She learnt that characters Billy and Honey Mitchell's baby, Janet, would be born with Down's syndrome.

Her own five-year-old son Kyle has the same condition, and she is one of three women who run Local Opportunities and Awareness of Downs syndrome (LOADS) in Ipswich.

“We mentioned it a couple of times between the group, that it was going to be dealt with, and several of my relatives phoned me to let me know,” she said.

“It felt like a good thing at the time because even if they dealt with it badly at least it would raise awareness of the condition - something which people seem to know little about.”

Mrs Hobbs didn't know her son would be born with the condition, and it was not until four days after he was born that doctors confirmed her fears. She went through the same period of uncertainty as Billy and Honey portray on screen.

Up until that point, nurses had told her there were problems with her baby's features.

Rachal Waters, secretary of the group, said: “Most of us have found the programme quite raw, because it was exactly how we felt to start with. It has felt like history repeating itself and for that reason there have been episodes where we have had to turn off the telly.”

The group was set up in January 2002 and now has 1,500 members. People join from Suffolk, Essex and south Norfolk and members have even joined before their child has been born - if it has already been diagnosed with Down's syndrome.

Mrs Waters said: “People can contact us if they need support and we will go to see them. We also produce booklets which are available from the hospital so that parents can be given them when their children are first born.

“We do sometimes get a call from parents who are expecting a Down's syndrome baby, and so we can become involved in helping them adjust, right from the start.”

Mrs Waters said it is difficult for anyone to come to terms with the fact their child will not be normal, even if they have been prepared for it.

She said: “I don't think a parent can ever be fully prepared for it when the baby comes, but we want to let people know they are not on their own.

“I thought it was interesting that EastEnders have written in that baby Janet has a heart defect, as this is a common trait of babies with Down's syndrome. My daughter Hollie had one too, but in the end the hole in her heart closed up by itself.”

But the women are not all full of praise for the heartwrenching storyline.

Treasurer Julie Robinson has a five-year-old daughter Melissa with Down's syndrome, and says she cannot bear to watch the show.

She said: “Some of it has been portrayed well and some of it hasn't. It seems a very old fashioned way in which the characters are all dealing with it. In my family it was not an issue at all. Melissa was accepted from the start.”

The soap is raising awareness of the condition. Since the storyline has been running, she has even had people stop in the street to ask how she deals with Down's syndrome.

“I have never hidden Melissa away,” she said. “She is part of the family and I am very proud of her.

“I did not know until she was born and when I was told there were two doctors and two nurses there. “The next day my own doctor came in and told me everything. He said she would never learn certain things or get very far.

“That was one thing I disagreed with in the show - because Honey was told when she was alone, and by just one nurse.”

Melissa has proved the doctor wrong, and is currently in mainstream school, attending

Langer Primary School in Felixstowe.

Catherine Banthorp, headteacher at the school said: “The expectations of Melissa, in terms of behaviour, attitude and as member of the school community, are those of all pupils here at Langer. Melissa meets the challenges of those expectations very successfully.”

Both Kyle and Hollie also attend mainstream schools.

Mrs Waters added: “People are still very ignorant about this condition. For example when I tried to apply for benefits to help me, I was told Hollie would grow out of it.”

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Anyone who would like to contact LOADS for support can call Rachal Waters on 01394 448246.

The group is also looking for funding, to continue offering support and any businesses who would like to sponsor the charity can contact Sonia Shelcott on 01473 410278.

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How well do you think EastEnders is portraying the issue? If your child has Down's syndrome how were you told? Write to Your Letters, the Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN or email eveningstarletters@eveningstar.co.uk.

Down's syndrome is a genetic condition (i.e. something you are born with, which is present in the baby from the moment of conception) caused by the presence of an extra chromosome.

Chromosomes are tiny particles, which are present in every cell in every tissue in our bodies. They carry the 'blueprint' for all the characteristics we inherit.

This blueprint is carried in the form of a coded message in a chemical substance called DNA. There are 23 pairs of chromosomes in each cell, hence 46 altogether. One of each pair comes from the father, one from the mother.

In 1959, French geneticist Professor Jerome Lejeune, discovered that Down's syndrome was caused by the presence of an extra copy of chromosome 21, making 47 chromosomes in all.

A 'syndrome' is a collection of signs or characteristics. The name 'Down' comes from the English doctor, John Langdon Down, who first described the syndrome in 1866, nearly 100 years before the extra chromosome was discovered.

People with Down's syndrome all have a certain degree of learning disability (mental handicap). The degree of disability varies from person to person and it is impossible to tell at birth what that degree will be.

Every day in the UK, between one and two babies are born with Down's syndrome, which means that one baby in 1,000 has the condition.