Why my son deserves a better life than one burdened by seizures

Muir was only four months old when he had his first epileptic seizure, but he would be eight before he was diagnosed with a rare form of epilepsy called Dravet Syndrome, which has left him with severe learning difficulties and developmental delay. It's every parent's worst nightmare; but in an astonishing twist of fate, Maxwell tells me later, he's also the reason she is alive today.

For now, Muir wants to blow bubbles in the garden. Maxwell patiently sits with him until he gets the wand to work and hundreds of soapy spheres fill the air. His face lights up and so does hers.

But her comment – about having it all and still being unable to cure Muir – both sums up Maxwell's life and shatters any illusions. On the surface, with her petite figure and blonde hair, Maxwell, 49, could be taken simply as a lady-who-lunches, who is married to a successful businessman, lives in a gated mansion in Dalkeith, near Edinburgh, and attends glamorous charity events.

But Maxwell is more than that. For one thing, she is more likely to be organising the events rather than just attending them. Maxwell – along with her husband, Johnnie – is the founder of the Muir Maxwell Trust, the country's most significant charity for paediatric epilepsy, which affects over 70,000 children in the UK. Since it began in 2003, the trust has raised nearly £7 million and helped hundreds of families and children. The trust has become Maxwell's life mission – and obsession.

"You would liken it to keeping a plate spinning," she says back in her conservatory. "I have a love/hate relationship with the charity. It's my Frankenstein's monster; it's the ball and chain round my ankle. But it's also my passion. It's one of those things I've started and have to finish – but where is the end?"

In short, there isn't one. "The charity has always been based directly on the experience of raising Muir. I came to this knowing nothing. We've followed Muir's lead."

Even so, it's a role Maxwell – who has two other sons, Connor, 18, and Rory, 13 – found herself in by accident. "Or it found me," she smiles. When Muir was diagnosed, there was no one to turn to – no specific charity dedicated to paediatric epilepsy.

"That's the reason we established ourselves," she says, recounting the early years spent rushing Muir to hospital in an ambulance. "We were on our own; we just muddled through."

Maxwell felt the "calling to do something", so after Muir's fifth birthday, a plan was put into action. Having gathered together a group of trustees, Maxwell brought her marketing skills from her former career into play (she worked in financial services), launched the charity from her home and embarked on organising the now annual fundraising ball.

"It was uplifting to come out of that dark five-year period and go into something so positive," she says, looking back. "We'd taken ownership of this complex condition – not just for Muir but for children across the UK. It was exciting."

Ten years later and Maxwell is the inspiring voice of children with epilepsy, a role which sees her take meetings at the Scottish Parliament. "I probably annoy them because I pipe up with, 'What about the children?' But somebody has to."

Being a politically focused charity was not the plan. "I never thought in a million years I'd spend my life running a charity," she laughs. "I was very focused on achieving things in life. I don't suppose I imagined achieving things to this extent for other people."

One of the trust's biggest achievements includes setting up a DNA testing service in Scotland. When Muir was diagnosed, the couple had to wait two and a half years for his results to come back from Australia. Now, because of the trust's work helping fund a service in Scotland, results come to families within 40 days. Earlier diagnosis means affected children will receive medication sooner. The trust has also recently committed to raise £1m to found the Muir Maxwell Epilepsy Centre, a research centre at the University of Edinburgh.

That aside, did Maxwell ever want to give up? "Yeah, I suppose I did," she replies. "Fundraising is hard work and there are days when I think, 'What am I doing?' But I'd miss it and I've enjoyed it more than anything I've ever done. But there's a price to pay. Nothing good is easy."

Like any family in this situation, Maxwell has asked the "why us?" question many times. "I've gone through thinking, 'I must have been chosen.' I'd be lying if I said there aren't days when I resent it. Most of all, there are days when I resent it for Muir because I think he deserves a better life than one that's burdened by seizures. He's never going to get married, have children or a job."

But Maxwell tries to not go there. "We like to think we dealt with it a long time ago, but there's a small part of you that will never ever deal with it."

Managing Muir remains a burden. He needs 24-7 care. "You have moments when it's hard to be tolerant of other people's problems, when they seem insignificant by comparison. You've got to constantly counsel yourself, because it's not their fault you've got a Dravet Syndrome child and they don't."

To add to the family's troubles, in 2005 Maxwell was diagnosed with an incurable, rare brain tumour, equivalent to bone cancer in her head, which had entangled around her cranial nerves.

"It felt like someone pulled the rug from under our feet. I thought, 'Hang on, we've got Muir, we can't possibly be dealt another hand of cards that's even worse.' It was a shock to the system."

The local neurologists were frightened of the problem. "They said, 'We have to keep you as well as possible, for as long as possible.' I thought, 'No, that's not good enough.'"

Thanks to their experiences with Muir and the trust, the couple tapped into their network of contacts, which helped them find Professor Michael Gleeson who operated on her at Guy's Hospital, London.

"He said to me, 'Don't worry, you're not going to die from this.' From that moment, I had no fear. We are soul mates in a way that I can't really describe because I owe the man my life."

Maxwell believes that, had she not found Gleeson, she would now be dead.

Although 80% of the tumour was taken away in surgery, 20% remains. It's "static," for now. Maxwell pulls out her latest scan results. "When you read this, you think, 'S**t, that's not very good.' At some point it will start to come back." But six years on, Maxwell is alive and well, althought residual damage from the tumour recently affected her vision. She turns 50 next month. "We're celebrating the fact that I'm still here," she says.

But was it all meant to be? "Was Muir meant to have epilepsy because I was going to have a tumour?" she replies. "I haven't a clue. But without Muir, I would never have found Gleeson. And through caring for Muir, I learned to follow my own instincts. But not in a million years did I anticipate the place that I was going to be in with my own health."

For now, she continues to work tirelessly on behalf of the trust – and Muir – finding ways of raising money so life-saving efforts like the distribution of epilepsy alarms to families – which alert parents if a child is having a seizure during the night – can continue. Maxwell also believes children like Muir should receive a "passport for life" – meaning people like Muir, who is now on his way to adulthood, are looked after from birth till death, without constantly having to justify the level of his need. "It's a hellish fight in its own right to then have to fight for everything that you need.

"Just two weeks ago I had a meeting with social services and, again, we found ourselves with a new social worker, telling the same story. To constantly be in that position is unforgivable. It's like asking someone to relive some tragic experience in their life over and over again."

Maxwell is pleased the trust has changed things for those children being diagnosed now, but hopes society doesn't neglect children like Muir for whom the damage is done.

"Muir has to live with the way he is, we have to live with the way he is and I would not want children like him to be forgotten about. They need care too."

Of the future, she says significant breakthroughs have been made but "what comes in the next 10 years will be the major breakthroughs".

"I'd like to think we will actually move toward cures for some forms of epilepsy. The charity's done great things but it's got more to do. The only point I might sit back and say, 'Ann, you did well,' is at the end – whenever that is. And I'm not there yet. Raising Muir means it's never going to stop."

www.muirmaxwelltrust.com