When foster mum Jane Dudeny adopted a terminally-ill baby she cherished every day with the dying child. Doctors had diagnosed little Annie with Edwards' Syndrome in 1995 and warned Jane she had only weeks to live. But that was more than four years ago. Jakki Phillips reports on a child who refused to give up.

WHEN foster mum Jane Dudeney received a phone call from social services asking her to care for a dying baby it took her no more than a few seconds to say yes.

The little girl had been born with Edwards' Syndrome at the Royal

Sussex County Hospital in Brighton, and doctors predicted she had only a few weeks to live.

A medical examination revealed Annie had two holes in her heart, but life- saving surgery to repair the damaged organ was impossible.

Her body was too weak to cope with an anaesthetic and doctors feared the drugs would kill her.

Doctors were alerted to Annie's medical condition only minutes after she was born. She was underweight, her fists were clenched and her spine was curved.

After consultation with experts in London, doctors discovered Annie was suffering from Trisomy 18, otherwise known as Edwards' syndrome.

Her condition was caused by a chromosome defect. She had three identical chromosomes in each cell instead of the usual pair.

Doctors told the birth mother Annie would suffer from major medical problems and said she was "incompatible with life". They said a high percentage of babies with Edwards' Syndrome were stillborn and 90 per cent died within a year.

The distraught mother-of-seven knew she would not be able to give Annie the specialist medical care and 24-hour supervision she desperately needed.

Jane Dudeney had fostered children for more than a decade, but had spent 11 years caring for her mother, who suffered from Alzheimer's Disease.

When her mother died in June 1994, social services decided to give Jane some time to get over the loss.

But, when staff heard about little Annie, they knew Jane was the perfect person to care for the terminally-ill child.

Jane, 52, of Southview Road, Peacehaven, said: "I just imagined a tiny baby alone in hospital and wanted to be by her side. I wanted to wrap her in a big soft blanket and bring her home."

Blessed

On a crisp spring morning in March 1995, Jane walked out of the hospital with Annie sleeping peacefully in a cot.

She said: "The first couple of months was terrifying. Annie would have repeated blue spells when her blood lacked oxygen and she became critically ill. I contacted the local vicar who came to the house and blessed her. I really thought I was going to lose her.

"Doctors told me there was little they could do. If she was put on a ventilator or other hospital equipment they said she would never come off it. So we kept our fingers crossed and hoped for the best."

But Annie battled on and amazed everyone with her incredible will to live.

Jane, who has now adopted Annie, said: "Every day was like a beautiful gift. I felt so lucky and privileged to know Annie and each day she brings me more and more happiness."

Over the years Annie has been close to death many times, but an inner strength has kept her going.

Annie is now four years old and mentally disabled. She cannot speak and weighs only 20 pounds and is fed through a tube while she sleeps.

But, when you play Annie music or stroke her skin, she gently smiles and blows bubbles to indicate her happiness.

She wears clothes which are meant for a two-year-old and will never be able to walk or crawl because her spine is curved and her muscles are weak.

Jane has transformed her lounge into a sensory playground for Annie, who loves twinkling lights and pop music.

She said: "I've virtually given up housework because I know my time with Annie could come to an end at any moment. I can't stand the thought of hoovering when I could be making Annie smile."

Annie spends hours lying on a huge yellow bean bag listening to her favourite band, Steps. Her feet rest on a vibrating bubble tube and she gazes up at a mirror ball which casts thousands of fragments of light around the room.

Jane said: "When Annie is in pain she likes to lie on a mattress and look at the moving lights. She cannot speak but doctors say her hearing and vision is fine.

"Annie loves toys with flashing lights and music. She will spend hours touching different types of soft fabric because she loves the sensation on her finger tips.

"Last year Annie was very close to death and I remember sitting in a hospital cubicle watching healthy children bombing up and down the ward on bikes. I felt very isolated and alone.

"I thought my baby was going to die. I was completely devastated and it was as if the world was spinning by and I was invisible. The beauty of a hospice is it's atmosphere.

"A calm and caring place to bring your sick child. Where people understand and will help you through the worst time of your life."

l THE Leo House Hospice Appeal was launched by the Brighton Lions Club in April. If you would like to make a donation, make your cheques out to the Brighton Lions Leo House Appeal, sort code 20-1275, account number 40956023, and pay them into Barclays Bank, or send them to Jakki Phillips, The Argus, Argus House, Crowhurst Road, Hollingbury, Brighton, BN1 8AR.

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