'Katie's condition left us isolated'

Jane Elliott
BBC News Online health staff

Katie goes to a mainstream school

Katie is your typical 11-year-old.

She loves all the latest clothes, Chinese takeaways and adores pop stars Westlife, the Sugababes and Robbie Williams.

She is happy and loving, as well as stubborn and defiant.

But Katie Green is also very different from the rest of her peer group.

Diagnosis

For Katie, from Blackpool, has a form of Down's Syndrome - mosaic Down's Syndrome (MDS).

Half her cells are 'normal' and half are Down's.

I cried for my child as well as me Judy Green

Her mother Judy was 29 weeks pregnant when she first realised there were problems with her unborn daughter.

Labour was threatening and doctors had to delay it for nearly 10 weeks, while they built up Katie's strength to remove two blockages in her bowel.

But it was not until the day before the birth that Judy was told by a specialist health visitor that Katie had Down's.

"I couldn't cope with all she was telling me. It was my baby, the baby I wanted. I told her to leave me alone.

"I felt as though I wasn't feeling anything. I cried for my child as well as me."

Test

Then just days after the birth doctors told Judy that her baby had in fact got a form of Down's called MDS.

"Katie was in St Mary's Hospital, Manchester where the doctors did a blood test which confirmed she had MDS.

"I thought what is this? Nobody could explain because it is so rare."

Over the years the Green family has struggled to cope with Katie's unique problems.

Her varied cell patterns mean that her level of disability is also very varied.

At the age of 11, she has the comprehension of an eight or nine-year-old and the mathematical ability of a six year-old, but her reading ability is spot on for her age.

Her parents are determined to give Katie as normal a life as possible and have encouraged and supported her to go to a mainstream school, where she is thriving.

But Judy said that Katie's rare form of Down's has left them feeling very isolated and eager to talk to other parents in the same position.

"I desperately needed to talk to someone who had a child who was the same as mine."

Now Judy and husband Bill have helped set up a website for other parents in the same position.

They hope it will help parents share their worries and successes - and enable children to communicate with each other.

Web-site

So far the Greens have only managed to contact a dozen other UK families with MDS children, which leaves them concerned that many others are struggling on alone in their unique situations.

"When a child has MDS they can have it in varying degrees. In Katie's case her cells are half Down's and half not, but I heard from one woman whose child only had 10% of Down's cells.

"People like me are sat at home with these children and they are told their children must go to special schools.

"I need to find these parents so that we can support each other."

A spokeswoman for the Down's Syndrome Association said they too offered support to MDS parents.

"MDS is a comparatively rare form of Down's, being diagnosed in approximately 1-2% of people with the condition.

"People with Down's syndrome all have a degree of learning disability which can vary quite considerably from one person to the next and this is also the case in people with the Mosaic form.

"New parents who have a child with the condition are welcome to contact the Down's Syndrome Association where they will find a range of support and information services that will certainly be of help and relevance to them.

"We can quite understand the need for parents to speak to other families who share their experiences and would welcome any initiative to put these families in contact with one another."