NERVES had never got the better of Ann Maxwell. But, as the Eskbank mum-of-three stood in front of a packed audience at a Downing Street reception, she was petrified.
The businesswoman turned charity fundraiser was there to collect an award for being the most inspirational woman in the UK.
"I had written out my whole speech in advance and memorised it word for word," recalls Ann, laughing. "I'd done stuff like this before so thought I'd be fine. Then, when it was time to do my talk I felt really nervous, shaky and forgot what I was supposed to say."
It wasn't the glittering occasion, hosted by cosmetics giants Clarins, or the high-powered surroundings that had overwhelmed her. It was the sudden realisation of how lucky she was to be there.
Two years ago, doctors told her she had an incurable brain tumour. The prognosis was bleak – ten years, if she was lucky, and quite possibly significantly less.
"One side of my face went numb around November 2005. I was aware of a slight deafness, as well as slight tinnitus, and I also had strange headaches. But I thought I had a virus so didn't do anything about it. It took me months to realise I needed an MRI scan."
Her financial security – husband Jonny is global CEO of Allianz Private Equity and former head of Standard Life Investments – allowed for a quick appointment at Murrayfield Hospital.
Ann was unprepared for what the scan would reveal. "It was a big tumour, and had tangled itself in all the cranial nerves and I was at risk of having a permanent palsy and deafness. I didn't for one second think it was anything serious – I had actually fitted the appointment around meetings."
The significance of the diagnosis didn't sink in straight away. "I was very pragmatic about it. I took the view that if they can fix it they will, and if they can't, so be it. It was the following week that it hit me badly as I had to go for a CT scan to reveal exactly what it was. The prognosis wasn't good at all – a maximum of ten years and if it was aggressive it was, well, fast."
Today, the forty-something is pragmatic about her illness.
"I've got cancer," shrugs the former private finance executive. "I've got bone cancer in my head, known as cranial chondrocytoma. It's a rarer-than-rare cancer, and my husband said to me, 'trust you to get a designer cancer'.
"Jonny is very much a problems and solutions man," says Ann. "He organised copies of the scans to be sent out into the medical world. He network-ed, set up conference calls for specialists and took the lion's share of the burden. He was my rock."
His research suggested that a biopsy which had been proposed would more than likely have killed Ann, the swelling of the tumour it would cause creating catastrophic damage. The only option was to cut away as much of the tumour as possible, then test it for cancer.
The operation was carried out at the Institute of Neurology at University College, London. "They had to get it out," Ann says. "They removed the tumour growing out of the bone. Once I realised there was a real risk of death, you have to be pragmatic. I put my affairs in order, I spoke to my children, but I never presented a fatal outcome to them. I was always optimistic and the children believed me."
Experts cut away 80 per cent of the infected bone during an eight-hour operation which opened up the whole right side of her face and disconnected her jaw. But the team of specialists couldn't reach the final part as it was too near an artery.
Ann, though, is confident she will be fine. "It's incurable but it's indolent right now. I've got grade two cancer but I've been told they don't believe I will die of this, and they're optimistic that when I need surgery again there will be a cure for cancer. My cancer will grow back and I have annual scans – it's a case of working out how fast it will grow.
"I faced death twice, because the operations were so complicated. I put my affairs in order. I had to face the possibility that I might not see my children grow up. But because of that, now every day is precious, a bonus. I don't have a fear of death."
And nowhere is that "seize the day" attitude more apparent than in Ann's work with the Muir Maxwell Trust.
She set up the charity in 2003 after her son, Muir, was diagnosed with a severe form of epilepsy. He was healthy at birth in 1997, but at four months old started suffering life-threatening seizures – uncontrollable attacks which caused brain damage.
Ann and her husband use all their business clout to organise an annual charity ball which has raised £3.5 million in five years. Items donated to the prize draw include a £25,000 diamond solitaire and an Alfa Romeo Brera.
As a result of the work, hundreds of families have seen their lives transformed.
One of the biggest problems for youngsters with epilepsy is the risk of a fatal attack while sleeping, when no-one is there to put them in the recovery position. This means parents are often forced to take turns watching their child through the night.
The charity has supplied 700 £1000 epilepsy alarms to fit under the mattresses of youngsters.
The Trust has also funded an £80,000 DNA sequencer machine at the Royal Hospital for Sick Children at Yorkhill in Glasgow. It is the UK's first genetic testing service to identify complex forms of childhood epilepsy and help with early identification of genetic epilepsy.
The results of medical research means the prospects are brighter for Muir than they once were.
"They are now able to prescribe a very specific cocktail of drugs and this seems to have a dramatic effect on the control of epilepsy," says Ann. "Muir is very brain damaged and if he'd had that treatment then his prognosis might have improved. He is 11 but he has the mental age of about three, with limited speech and language.
"Without Muir's cocktail of drugs he would be having regular and frequent seizures day and night."
Ann's energy and determination have earned her the title of 2008 Clarins Most Dynamisante (or dynamic) Woman of the Year. The title, which honours women who help children, comes with a £30,000 prize.
The recognition has further fuelled Ann's desire to drive her charity on. "I'll never leave any stone unturned to find the best treatment," she says.
"My determination has broken new ground with Muir, and other children, and, in this way, I hope I have benefited him. And all the other children out there."
SUPPORT TRUSTTHE Muir Maxwell Trust provides practical support to children and their families coping with severe epilepsy.
Established after Ann Maxwell raised £150,000 for the cause, it also campaigns to increase awareness and understanding of epilepsy.
The Trust offers direct help to those families struggling to cope, as well as supplying specialist equipment to hospitals. Other initiatives dedicated to helping children with severe epilepsy also receive its support.
Traditionally, the Trust hosts annual major fundraising balls in either London or Edinburgh to raise much-needed cash, but the award of £30,000 from Clarins has enabled Ann to hire her first full-time fundraiser.
For further details about its work and to find out how to offer your support go to
www.muirmaxwelltrust.comThe full article contains 1305 words and appears in Edinburgh Evening News newspaper.
