Beauty is only skin deep, but few understand the full meaning of this expression more than mother-of-three Kelly Walters. She talks to Tamzin Hindmarch about her daughter Courtney's disfiguring condition, and her campaign to raise awareness of neurofibromatosis

WHEN Kelly Walters and former partner Simon discovered she was four months pregnant aged 17, she gave up her job at the Foster Grant factory in Longport, and five months later gave birth to Declan, a 6lb 12oz healthy baby boy.

"I was in a long-term relationship with his father, and although I was stunned, I just accepted it," recalls Kelly, fondly.

"Then, Simon and I decided to try for another and again during the pregnancy everything seemed fine.

"The only thing I can remember is watching a documentary one night and turning to Simon and saying, 'It would be weird if this baby had this'. It turned out she did. Still to this day I have no idea where the comment came from."

Now aged 23, she lives in Scott Road, Little Chell, with husband Peter and their six-month-old-son Riley, Declan, now aged five, and sister Courtney, who was born in July 2004 weighing 7lb 14oz.

Kelly says that while Courtney's birth was straightforward, she immediately sensed there was something wrong.

"Courtney came so fast I was lucky to get to the hospital on time," she says.

"But I noticed she had an oddly-shaped head – it was completely flat at the back. I was told that because she'd been born so quickly her head hadn't shaped properly, but that just didn't ring true."

Kelly also noticed brown spots appearing on Courtney's body. Health visitors, she says, believed they were birth marks in unusual places so there was no cause for concern.

"It wasn't their fault, it just wasn't anything they'd seen before," says Kelly, who now recognises the marks, known as café-au-lait, to be early indications of her daughter's disease.

For 18 months, Kelly continued to accept this explanation. It wasn't until a routine check-up at the hospital that staff asked to take a closer look at Courtney and referred her to a children's ward.

Following subsequent tests, Courtney was diagnosed with neurofibromatosis Type 1 (nf1) three years ago.

"You know there's something wrong when there are four doctors walking around looking at your baby," says Kelly.

"Then they reeled off this big long name and I hadn't a clue what they were talking about."

That night Kelly began finding out everything she could about Courtney's illness on the internet.

"On the first websites I visited I found some really scary pictures," she says, "then I finally found one which had useful information on it and suddenly remembered the documentary I'd seen. I began to cry."

What Kelly found out is that neurofibromatosis is a genetic illness which affects the nervous system causing tumours to grow on the nerves. They are not usually cancerous, but can be. Because of the numerous ways the disease presents itself and the complications arising from them, life expectancy can be low.

"These tumours can grow and grow and can appear as lumps on the skin, or they grow inside the body so you can't see them," explains Kelly. "The cause is a rogue chromosome which can either be hereditary or, as in Courtney's case, be due to a genetic mutation.

"If they grow on your face, for example, they can be one huge tumour or appear small but in their thousands. They are also very painful. The only thing the doctors can do is remove them – providing it's possible to do so."

Although at present Courtney is suffering relatively mildly, the list of symptoms are already endless.

"She has café-au-lait bigger than two-pence pieces and freckles all over her body," says Kelly, "and she has regular eye tests to check there are no tumours behind them which could make her go blind.

"If it hurts when she walks, I worry her shin bones are beginning to deform, and she has yearly check-ups to see whether she is developing scoliosis of the spine."

In addition to this are the behavioural problems.

"Courtney is lively, happy, bright and very clever, but she has a lack of coordination and can't judge distances," says Kelly. This is coupled with a failing of short-term memory which means she forgets things straight away.

"Then, there's the acting on impulse. Courtney hugs the lollipop lady on the way to school and a teacher before she leaves, and she talks in your face, because she doesn't realise there's such a thing as standing too close."

Reading this, one might be forgiven for thinking Courtney could struggle in social situations. Yet at her young age, her mother says she is positive and outgoing, and surrounded by friends at Whitfield Valley Primary School.

But it's the future that worries Kelly.

"It's the ignorance that really bothers me," says Kelly, who believes the adult world is far less tolerant.

"One documentary I watched was actually called The Ugly People. In others, that's how people with neurofibromatosis are introduced. What worries me is what might happen as she grows older – those lumps that make parents think their kids might catch something, and cause them to stare or look away."

Crueller still, if Courtney has children, there's a 50/50 chance she will pass on her condition to them too.

"Will she die young? It's a possibility," says Kelly.

"I can't say she never will as if I did it would be a lie. The problem with this disease is no-one knows what will happen."

Thankfully, both Courtney's father – with whom she remains good friends – and Kelly's husband have been supportive, as has Courtney's big brother Declan.

"He's old enough to realise something isn't right and looks out for his little sister all the time," Kelly adds. "Courtney herself knows she has 'special spots'."

It has taken three years for Kelly to come to terms with the implications of her daughter's illness, but now she feels stronger she wants to help others battling the same illness.

As well as setting up a new local Facebook group, Kelly also plans to send a T-shirt around the world to raise global awareness of the cause.

Known as The Travelling T-shirt, she says: "I want people with neurofibromatosis to sign it and be photographed with it to see how far around the world we can take it.

"More people have neurofibromatosis than cystic fibrosis, yet when Courtney was diagnosed I was shocked at how few people knew what it was. I felt there was no-one to turn to and I don't want anybody else to feel that way."