YourLIFE: Frozen in time; THE GIRL WHO WILL NEVER GROW UP.
SHARON West was pushing her youngest child in a buggy when she bumped into an old schoolfriend. "I didn't know you had a new baby!" said the woman, peering at the cute little tot. "How old is she now?"
"This is my daughter Charlotte," Sharon replied. "She's 10."
It's a bizarre conversation, but then Charlotte is a highly unusual child. Since she was born on January 22, 1996, weighing 6lb 13oz, she has grown at a rate of just one centimetre a year.
At 10, she weighs only 15lbs and is the size of an average 15-month-old child. She wears baby clothes and nappies and still drinks from a bottle.
Sharon and her husband Wayne didn't find out there was anything wrong until after Charlotte was born. Then they were told she had a condition that meant she could die at any time - yet she has survived to confound the experts.
Sharon, 38, from Gillingham, Kent, says: "I had a normal pregnancy. The blood tests and scans showed nothing to worry about.
"Only one thing was unusual: I was certain when I'd conceived, but doctors kept insisting I was wrong because my baby was so small. They kept saying she'd be born a month later than I reckoned."
But Charlotte was born exactly when Sharon had predicted. The 30-hour birth was far more difficult than her first two deliveries and only when the baby finally arrived did midwives understand why.
"Charlotte came into this world with her legs fixed in a sitting position," Sharon recalls. "Midwives said it was like delivering a fish-hook. But apart from that she looked much like her big brother and sister, and when she was handed to us for a cuddle we thought she was beautiful."
She was taken to the special care baby unit at All Saints hospital in Chatham, with slight breathing difficulties and Sharon was left to phone her relatives with the good news, blissfully unaware of what was to come.
Just 24 hours later, a paediatrician took a skin sample for a biopsy and found the devastating truth.
Charlotte had rhizomelic chondrodysplasia punctata (RCP) - a rare condition that causes short limbs, bone abnormalities and restricted growth. Most sufferers don't live past infancy and there are only two known cases in the UK. Sharon recalls: "The paediatrician told us nothing could be done to help Charlotte and that she would live for no more than five months. We just sat there, looking at each other in silence."
The next few weeks were hell. "When Charlotte was well enough to leave the incubator I could hold her and feed her," says her mum. "But I was on auto-pilot, like a robot - I felt no maternal love for her. Looking back, I realise I was too scared to bond with my little girl for fear of losing her." After two weeks they brought her home to their other children, Darren, then 11, and Chantelle, two. For months they took it in turns to care for her day and night, afraid that she could die at any time.
"Those first few months pushed us to breaking point," admits Wayne. "When Charlotte had a paddy, the only thing that soothed her was movement and we paced the floor with her for hours. It wasn't unusual for us to go for two days without any sleep."
But somehow they got through it and Charlotte continued to amaze everyone by passing milestone after milestone. When she reached her first birthday, Sharon finally felt able to bond with her youngest child.
"For the first time I dared to hope that Charlotte might live," she says. "And finally I felt able to show her I loved her as much as our other kids."
For years they took special precautions to keep Charlotte safe from harm. She was so frail that even a cold could have killed her, so they tried to keep her away from germs. They adapted their home, installing coloured lights to stimulate her and a "sensory bathroom" paid for by well-wishers.
But it was hard living with a child who would never progress eyond babyhood. Wayne says: When Charlotte was five the nursery she attended said she was too old to go any more, even though she shares the size and mental development of a one-year-old.
"After that there were no local schools able to give her the one-to-one care she needs, so ever since she has remained at home with us. She has never been able to roll or sit up or crawl, and the only language she has is a handful of words like Mum, Dad, and Yes."
BUT Charlotte has come on in leaps and bounds in other ways. Wayne explains: "She has left her early tantrums behind and is more settled and cheerful.
"When we hold her and play with her she chuckles away - she loves it when we sing nursery rhymes or paint her fingernails. We try to make sure that her quality of life is as good as it can get. She's even moved on to normal food and loves fish pie and veg."
She is virtually the same size she was at one year old, and Sharon reckons she has got through at least 30 buggies. "You get the odd idiot who stares and makes a cruel comment, but I've learnt to ignore them," she says.
Life has improved for the family since carer Claire Hogben came into their lives. She looks after Charlotte in her own home one or two nights a week, giving Sharon and Wayne a break and more time with Chantelle.
"Claire is wonderful," Sharon says. "I don't know what we'd do without her." Last month Charlotte was a bridesmaid at her wedding.
But the heartbreak of her condition will never go away. It's doubtful she'll reach adulthood. Sharon says: "Every family with a disabled child finds its own ways to cope. We have learnt that the best way for us is to take one day at a time and never worry about the future.
"We never really pay attention to her disabilities any more. To us she is simply our beautiful little Charlotte, and we accept her and love her just as she is."
I was like a robot - scared to bond with my little girl for fear of losing her
You get the odd idiot who stares at her, but I just ignore them now
RHIZOMELIC CHONDRODYSPLASIA PUNCTATA: THE FACTS
What is it? An inherited disorder that occurs about once in every 100,000 births. It's so rare that there are only two known cases in the UK, although it's estimated one in 200 people carries the faulty gene. Cells work abnormally which affects cell chemistry and function.
What are the signs? Babies with RCP usually have bone abnormalities and poor bone growth, short upper arms and legs, stiff joints, cataracts, dry skin and severe development delays. At birth most infants with RCP have a characteristic round face, high forehead, small upturned nose and a long, flat upper lip. Diagnosis can be confirmed by a blood test.
Treatment Although there's no cure, children with RCP are often given medication to treat seizures which can develop at from 18 months to five years. Sleep is often a problem, so doctors sometimes prescribe sleeping medicines.
What is the prognosis? There is no cure and one in five babies born with RCP doesn't survive beyond the first five weeks of life -usually because of respiratory problems or pneumonia. All children with RCP will die early, usually before their teens.
BIG SISTER: Chantelle, two, watches over baby Charlotte' SMILES: Charlotte, aged one, enjoys a cuddle from Chantelle' FIGHTER: Charlotte, 12, pictured with parents Wayne and Sharon and big sister Chantelle, confounded the experts Pictures: MICK GELL/ FERRARI PRESS' MY GIRLS: Mum Sharon with newborn Charlotte
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|Publication:||The Mirror (London, England)|
|Date:||Jul 11, 2006|
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