Hannah Maxwell-Jones and her family have just returned from the US where the disfigured little girl underwent life-changing surgery. Correspondant Barry Nelson spoke to them.
IT was in the back of an Arkansas taxi cab that Allison realised she was among friends. "I guess you're going to see the Arkansas Healer," the driver drawled, in a Southern American accent.
Allison Maxwell-Jones was just minutes away from a face-to-face meeting with the surgeon who was to operate on her daughter's seriously-deformed face.
The intensive care nurse from Teesside was elated that, after raising £58,000 from generous North-Easterners, she was heading for the Arkansas Children's Hospital in Little Rock.
She knew that the hospital offered her two-year-old daughter Hannah the best chance to give her a new start in life. But she was also quaking inside.
"It was an emotional ordeal, stressful and isolated. I really felt that we were thousands of miles from home," says Allison, hugging Hannah at their home in Nunthorpe, ten weeks after she had surgery in America.
Hannah was born with serious facial disfigurement, caused by a giant vascular lesion which distorts her features. After hearing of the miracle-working surgery of Professor Milton Waner, Allison and her husband Keith set their hearts on getting their daughter to him.
Prof Waner is the leading exponent of a radical new type of reconstructive plastic surgery. His fame means that desperate families from every corner of the world have sent disfigured children to the Arkansas Children's Hospital in the Deep South of the US.
Knowing that the cost of making four or five trips to America would be beyond their means, last year the Maxwell-Jones family approached The Northern Echo to see whether readers might help. The response astonished them. Within a few weeks the staggering total of £58,000 had rolled in - well over what the family had hoped for, as they understood that surgical costs would be covered by a charitable fund.
Buoyed up by the legions of well-wishers back home, the family found a warm welcome in Arkansas. Despite flying out a week after the terrorist attack on the World Trade Centre, it was business as usual. Everywhere they went in Little Rock, people asked whether the British family were in Arkansas to see their famous surgeon.
The long procedure was successful, laying the foundations for a succession of future operations. But the family's blood ran cold when they were presented with a medical bill for £15,000.
"I was shocked because that was not what we were led to believe," says Allison. "We understood that the surgical treatment was going to be free of charge. We knew there would be some medical costs but not the whole cost."
It turned out that the fund which covers the cost of much of Prof Waner's work with children had been exhausted - a reflection of his increasing workload.
Added to the costs of travel and accommodation, the Maxwell-Jones were suddenly looking at an £18,000 hole in their fighting fund.
"It was quite a shock but it would have been a bigger shock had we not had the money," Allison adds. The family have taken the financial blow in their stride, but they are undoubtedly worried about the long-term cost of treatment.
"Prof Waner is talking about another four operations before Hannah starts school," says Allison. The family are expecting to pay for the next operation in full, but there is a chance that Prof Waner may perform the surgery on one of his regular visits to Europe.
"He may be able to operate on Hannah when he is in Germany but we are ready to go out to America again," she says.
Even though the money will start running low after the next trip, Allison is dead against another fund-raising push.
"I won't be doing that again. It took an awful lot out of me," says Allison. "We were hardly destitute, but what we thought was going to cost £20,000 is realistically going to be more like £100,000 and nobody has that kind of money."
While money remains a long-term worry, Allison's more immediate concern is to try to change social attitudes to people who are different. Since January, she has been a member of the advisory council of the charity Changing Faces, which is backed by well-known Falklands veteran Simon Weston, who has made a new life after suffering horrific burns.
"I feel quite privileged: the council is made up of professors, doctors and nurses," says Allison, making light of her own expertise in the intensive care unit at James Cook University Hospital in Middlesbrough.
"This charity is quite exceptional, it does wonderful work with people of all age groups, it works to provide a better future for everyone with disfigurement."
She is inspired by its devotion to provide practical support to families and individuals. But even more importantly, Allison is enthusiastic about the message that attitudes to disfigured people have got to change, and she has been holding talks with consultants at the James Cook hospital with a view to setting up a local group.
"The aim of the group must be to address the psycho-social issues around disfigurement," she says. By addressing these issues the hope is that the new group can change things, help people feel less isolated and help them get on with their lives more easily.
The project is in its infancy but Allison is determined that it will take off.
"Hannah may be having surgery to improve her appearance but it would be unrealistic to think we will have got the problem sorted. Her life is going to be influenced by how she accepts disfigurement and how others accept it,"
"People should should look beyond the disfigurement to the person," says Allison, who is determined to make a differnce.
*If you are interested in getting involved in the new North-East group you can contact Allison via Barry Nelson by ringing (01325) 505075.
*Changing Faces is at 1-2, Junction Mews, London W2 1PN. Tel. (020) 77064232
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