“If you knew you were going to die young, would you rather you were never born? The answer is absolutely no. But we thought we had 50 years.”
Widow Louise Oswald is faced with a terrifying truth. She lost her husband Neil to Motor Neurone Disease (MND) at the age of 34. His dad died before him, at 50, and his grandfather before him, at 62.
Now she is raising their five-year-old son Oscar. And she will be forever wondering if he too will develop the disease. “It’s such a terrifying thought,” she said. “But he has as much chance as his father did.”
Neil, an architect, died in 2009. He was one of less than 10 per cent of sufferers with a family history of the disease. In his last months, Neil decided to let a camera crew into the family’s Harrogate home. He wanted the resulting film, I Am Breathing, to raise awareness of the disease - to find a possible cure.
“Neil felt guilty for not doing more in the years between his father’s death and his own diagnosis,” said Louise. “He looks at the camera and says ‘my dad died 10 years ago and I’ve done nothing’. We can’t make that mistake again. This is one way we can change that, for Oscar.”
Neil was diagnosed in October 2007, when Oscar was just a few weeks old. It started with his foot ‘slapping’ against the ground as he walked. “I just put it down to his old shoes,” said Louise. “I bought him a new pair that weekend.”
But it started again, and then Neil found that he couldn’t lift his toes. Within a year, he was paralysed from the neck down.
“You never think it’s going to happen,” said Louise. “He certainly didn’t live his life as if he was going to get sick.”
Neil dealt with the diagnosis very practically, she said, wanting to talk to every doctor and hoard all the information he could find.
“I was trying to be optimistic at first,” she said. “But Neil’s family knew there was no hope at all. I got there fairly quickly.”
The Platts had been living in London but with the diagnosis came the knowledge they would have to leave. The family moved to Harrogate to be close to Neil’s parents. “Forewarned is forearmed,” said Louise. “Once Neil was completely paralysed, there had to be three able-bodied adults in the house at all times. We called on friends, family, anybody who could help. Very quickly we lost privacy.”
Looking after Neil was challenge enough, but Louise had a young baby to care for as well. “I had one person trying to walk, learning to talk and feed himself, and another going in the opposite direction,” she said.
“In the middle of the night Neil would be uncomfortable. It would take an hour for me to physically move him, then Oscar would start to cry. I was exhausted.”
The family had an army of helpers. District nurses, a GP team and occupational therapists. But one of the greatest support services came from Harrogate’s Saint Michael’s Hospice where Neil would go for intermittent care.
“It was as close as we could get to a home from home,” said Louise. “He could have a bath! You can’t underestimate what that meant for him.”
Neil started writing a blog. It was easier to share than truthfully answer every polite question about his deteriorating health.
And it was this blog that triggered the documentary. A film friend from Edinburgh University, where they had all studied together, put them in contact with a documentary maker. Soon, a film crew moved in. Their presence, says Louise, was barely noticed. “There just weren’t days anymore where it was me, Neil and Oscar,” she said. “At least they weren’t in uniform, that was nice! And the time Neil was talking to the camera was good time. He felt he was doing something.
“He knew he wouldn’t see it. But it would speak for him, long after he was gone.”
Neil resisted going into Saint Michael’s Hospice until the very end. But on February 24, 2009, in a scene shown in the film, Neil dictated his final blog post to Louise.
“The reason I have chosen to go to the hospice tomorrow is to draw the curtains over what has been a devastating, degrading year and a half,” he whispers.
Neil died the following day. “Until then I hadn’t given a second’s thought to being a single parent,” said Louise, now 39. “That threw up its own challenges. I tried to talk to people, I even went to a counsellor but I spent the hour educating her on MND. I never went back.”
The best thing she did, she said, was sign up for a charity challenge to walk the Great Wall of China with others affected by MND. For the first time, people knew what she was talking about and gradually she became herself again. “The next time I had a wobble, I signed up to an internet dating site,” she said. “I went on one date, and now we’re married.
“The last thing I was going to let happen was for this disease to take three lives. We’re happy now.”
Louise married Robin, a children’s doctor, and they are moving soon to St Andrew’s in Scotland.
“Oscar calls Robin dad, although we’ve reserved daddy for Neil,” she said. “I can’t deny him the chance to call someone dad. He still gets a kiss night night from his daddy. And he knows that mummy has to talk to a lot of people, but that’s because daddy was so brave.
“And when he has questions, there will be a wealth of information there for him.”
l Neil’s story has inspired two local charities to work together to provide enhanced services for MND sufferers in the Harrogate District.
Saint Michael’s Hospice and the Yorkshire Dales branch of the Motor Neurone Disease Association (MNDA) have set up the area’s first MND specialist to co-ordinate care. They are hosting a screening of I Am Breathing at Wetherby Film Theatre tomorrow, Friday July 12, at 7.30pm. It will include a question and answer session with Louise and the Saint Michael’s MND specialist Corinne Spence. Tickets are £7. For more details call the cinema on 01937 580544.