If only we could have stopped our child growing up, as well

She is wheelchair-bound, fed through a tube in her stomach and still wears nappies.

Katie, who is 15 in March, is now almost five feet tall and still growing.

Katie's devoted mother Alison, of Coxes Farm Road, Billericay, was moved to speak out when she heard the case of Ashley, the nine-year old girl in America who has been given a hysterectomy and hormones to stunt her growth.

Known to her parents as their "Pillow Angel", the American child has the mental ability of a three-month-old baby and cannot walk or talk.

Alison and her partner Peter are firmly in support of the US couple's decision and wish they had been given a similar choice when Katie was younger.

Alison said: "It's difficult to say in hindsight whether we would have made the same decision but I think the choice should be available.

"The hysterectomy is something that, without doubt, we would like to pursue.

"She doesn't need the discomfort and distress that menstruation offers," said Alison as an explanation.

"Katie has problems in life just sitting in her wheelchair, for example, or sleeping at night. Things that we all take for granted."

As part of her treatment Ashley also had her appendix removed.

This is something else that Alison and Peter feel would benefit their daughter.

"It's heart-rending," admitted Alison.

"We don't want to subject our daughter to an operation like a hysterectomy in the short term, but in the long term we know it will make her life better."

Katie, a pupil at the Pioneer School, Basildon, is able to tell carers when she is in pain, but is unable to express where it's coming from.

In the past this has meant the couple enduring six weeks of watching their daughter in screaming agony thinking she had constipation, when in fact she had an abscess on her foot.

They worry with something as painful and hidden as appen-dicitis they wouldn't stand a chance. Removal of her appendix would prevent this.

There's no doubt about the couple's devotion to their daughter.

It might look as though they are looking for an easier life for themselves. And frankly who can blame them?

They are simply desperate to give Katie, who isn't expected to live beyond 30, the best quality of life for the time she has left.

"Normally, with the rest of us, as we grow up our life experiences expand. We can go out and experience life.

"But for Katie, doors have closed rather than opened because of her size and weight," said Alison.

"Everything was easier within the family and Katie got more out of life when she was smaller.

"We visit a lot of National Trust properties, which strangely enough Katie loves. She loves the atmosphere and the creaky floorboards.

"Where we used to be able to lift her wheelchair upstairs and go pretty much anywhere with her. Now we can't even get through the front door.

"Even going to discos. She loves being swung around on the dance floor but as her wheelchair has got bigger she can't do that without taking six or eight people out in the process."

"When she was younger I could be more of a mum to her, but gradually the mum role is decreasing and the carer role is increasing.

"It's quite sad for both of us," said Alison.

For the past few days Alison's voice has been heard on national radio and television.

It has come from her fight for the best life for her Katie.

Alison said: "When the story broke about Ashley I heard a couple of so-called experts commenting on how they felt the child's human rights were being abused," she said.

"At the time I was getting Katie ready for school, changing her nappy and doing all the everyday things I have to do with her.

"I was thinking why don't you come and stand here and do what I'm doing now and then you'll be qualified to make claims like that on the radio?'."

Alison e-mailed the show saying just that and soon found herself in the media spotlight.

Alison added: "We live in hope that by raising these issues, maybe it will pave the way to making the hysterectomy procedure more straightforward for Katie and other children like her. We know not everybody will feel like us, but it's about being able to have the choice.

"At the moment I don't have a choice.

"I'm Katie's expert and I challenge any expert out there to tell me they know what's best for my daughter better than me."