By Sue Newman  August 8 2011

Graeme Lock was retired, enjoying life and looking forward to a summer spent fishing.

In the time it took for a doctor to deliver a diagnosis to his daughter-in-law, all that changed, and instead he's planning a seven-month stint as a foster mum to his grandsons. He's moving to the tiny town of Opaki, near Masterton, and their mum is heading to the United States for ground-breaking medical treatment.
Allyson has a rare form of muscular dystrophy, Pompe disease. She's one of just four sufferers in New Zealand and without treatment, she will die.
For Allyson to receive the treatment she so desperately needs, she must live in Florida and her family will carry the financial cost. She has no idea how much that will be, but when you are faced with certain death, there's no option, she said.
"Within two years I'll be in a wheelchair and on a ventilator and my life will basically be over. Faced with the alternative, I have no choice but to have this treatment."
While Graeme is looking forward to becoming number one carer for grandsons Benjamin and Joshua, seven and nine, he's angry that the family is being forced to foot the bill for Allyson's medical treatment. That's particularly galling when money was recently given to the stray Emperor penguin that recently underwent life-saving surgery, he said.
"Our Government won't fund this, there's no money for it, but what about this damned penguin, they're funding it. That penguin got all the help it needed and there are all these people who need money for medical treatment and they get nothing."
Life will be busy, with a school run, after school activities, cooking, cleaning and filling in as stud master for the family's pony stud, but as an ex-farmer, he reckons he can turn a hand to most things.
"I suppose I'm putting life down here on hold, but when it comes to family, you don't have a choice and I'm really looking forward to getting to know the boys well."
Pompe is an insidious disease. Allyson believes it has been slowly invading her body for years. Because its symptoms are non-specific, it is difficult to diagnose.
"It just sneaks up. The only way I can describe it is to say I feel old – I'm 46."
She was diagnosed in July last year and finally having a name to hang around her symptoms was a relief. Having a name, however, brought its own challenges, as Allyson read everything she could about the disease. What she read was alarming. She discovered Pompe was fatal.
"A few years ago I thought if I was told I had a fatal disease I'd be a blithering mess, but I've surprised myself. I want to use my energy to fight it. If it wasn't for this disease, I'd have a good life."
She discovered the Florida progamme, but she also discovered the drugs she needed were not funded under New Zealand's public health system.
Undergoing seven months of treatment without family support will be tough, but financially it's impossible for husband Steve or their children to accompany her.
"Just for me going it will have a huge impact on our finances."
Currently the Florida clinic is the only treatment option, but early next year a sister clinic will be established in Brisbane. Once her seven-month treatment programme is completed, she will need to fly fortnightly to Brisbane for additional infusions until the end of next year.
"My greatest hope is for the medication to work and I can come back, be normal and take a bigger part in family life. This is not a sacrifice if I'm healed. If I have no treatment, I'll die."
With Allyson due to leave New Zealand on August 16, the family is desperately trying to raise money, but when you're doing this through raffles, donations and by selling firewood, it takes a long time to get there.
Inevitably the size of their mortgage will increase.

Pictured: Ashburton man Graeme Lock is preparing to tackle the role of foster mum to his grandsons.