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    Man diagnosed with Motor Neurone Disease at just 37, dreams of seeing Foo Fighters again

At just 39, Bay tradie Kevin Manning keeps his coffin in the garden shed.

He is ready for his "end game".

Diagnosed two years ago with a death sentence disease which has no cure, he's trying to keep it as normal as possible for the kids - "or as normal as you can for kids who know their dad is going to die," says his wife Sian.

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The fit and previously healthy father of three celebrated his 37th birthday leaping around at the Foo Fighters' Perth gig on the band's 2015 Sonic Highways tour.

Kevin's dream is to be alive to see the rock band this February in Auckland.

It will be his 40th birthday.

"I won't be dancing," says Kevin.

He's now in an electric wheelchair.

He hopes his voice won't have deteriorated by then so he can still belt out the lyrics.

Starting to slur has been what has upset him most.

Sian strokes her husband's head as he lies on a hospital bed in the couple's Katikati living room.

"Closer than ever" Kevin Manning and his wife Sian. Photograph by John Borren

"He's chilled out about what's happening. He's accepted it. He's the same goofy, smiling Kevin...it's not like he is going to throw his toys out about it."

"Well I can't, can I," Kevin grins.

Kevin has motor neurone disease (MND) which causes the death of brain and spinal nerve cells that control muscles that enable us to move, speak, swallow and breathe.

The disease gets worse with time, causing increasing disability and, eventually, death.

The Manning family before the disease took full hold. L to R Aden, Carys, Kevin, Sian and Zane. PHOTO/ Jackie O Photography.
The Manning family before the disease took full hold. L to R Aden, Carys, Kevin, Sian and Zane. PHOTO/ Jackie O Photography.

According to MND New Zealand, "most people with MND live for 20 to 48 months after symptoms begin".

Kevin's symptoms began in March 2015, a few weeks after seeing the Foo Fighters.

The family was living in Perth, where he was a fly-in fly-out electrician for a mining
company.

"I'd hurt my left arm wakeboarding. It wasn't getting better with physio, so they sent me to a neurologist," he said.

Sian thought he'd "torn an nerve...at worst, needing surgery".

Instead the neurologist delivered the damning bombshell: Motor Neurone Disease.

Kevin didn't know what it was.

Sian googled it before they got back in the car.

"Stunned", the couple had one hour for the grim prognosis to sink in on the drive back home to the children: daughters Carys and Aden and son Zane, who were then just 9, 11 and 14.

Breaking the news was hard for the tight knit family,

"We'd joked about his weak arm before, calling it 'Dad's strong arm'. So that's how we broke the news. Saying, 'you know Dad's strong arm, other parts of him are going to get like that'," says Sian.

The kids have been "brilliant".

"Zane worried how people might treat Dad, if they would be mean to him if he was in a wheelchair, but really they know he is just the same. He is their Dad... Carys, now 11, did a talk this year at school about MND. One of her friends cried."

At first Kevin thought he would be able to continue work, but used to working 16 hour days, fatigue set in and he couldn't do simple tasks like buttoning his shirt.

The family returned to the Bay where Sian hails from. She is Kevin's fulltime carer.

Kevin Manning who got Motor Neuron Disease at 37, with wife Sian.
Kevin Manning who got Motor Neuron Disease at 37, with wife Sian.

The couple celebrate their 18th wedding anniversary in December. They are happy -"happier than ever" in some ways, says Sian.

"There are silver linings. We chat in the shower, I help him go to the loo. We go out to lunch and I feed him. This is us. It is our normal."

Kevin agrees,

"We were always close. Now we are closer than ever."

Immobilised in bed, Kevin spends the day watching fishing videos on YouTube.

He's had a feeding tube inserted with a peg. He doesn't ask 'why me'. He's not angry about his fate,

"I've had a couple of boo hoos...it's frustrating sometimes like not being able to scratch your nose, to ask others to do things I am used to doing, but there's no point being angry because it is what it is."

Kevin Manning who got Motor Neurone Disease at 37 says his dogs are his
Kevin Manning who got Motor Neurone Disease at 37 says his dogs are his "therapists and counsellors"

Before, Kevin was the one who used to drag his wife out to socialise.

Now Sian uses all her strength to hoist her 1.9m, 132kg husband into the chair to take him to the garden.

The neighbours have built a ramp for his wheelchair so he can come to their outdoor bar where they host rugby games, says Sian.

"Kevin's there in his wheelchair with big burly guys drinking beer - they put chips in Kev's mouth and put the bottle to his lips."

The coffin in the shed has pictures on it. The kids all know it's there.

The family would have liked to tick more things off the bucket list,

"A bit more travel...some more things...but we ran out of time," says Sian

Despite knowing they do not have their beloved husband and Dad for a long time, they are a happy family, not miserable at all, says Sian.

Kevin Manning who got Motor Neurone Disease at 37, says his dogs are his therapists . Photo, John Borren
Kevin Manning who got Motor Neurone Disease at 37, says his dogs are his therapists . Photo, John Borren

"We enjoy each moment, each day,

"Getting to my 40th, having a shindig - with a pig on a spit, we have to have that." says Kevin.

"And the Foos."

Kevin used to love singing the spinning infinity off The Pretender.

Now his favourite song is Run.

He's hoping he will hear Dave Grohl sing the lyrics next year - words that strike a bitter sweet chord for Kevin and his family who have discovered a deepness of love that perhaps only comes knowing "the end game".

"Before the time runs out, In another perfect life, We run"


Walk 2 D'Feet MND 2017

Fundraiser for MND New Zealand in 17 locations on Sunday, November 12 2017.

mnda.org.nz/walk

Text WALK to 2449 to donate $3 to MND New Zealand.

Tauranga's Walks 2 D'Feet MND is 9.30am at Fergusson Park.

ABOUT Motor Neurone Disease (MND)

Causes the muscles that enable us to move, speak, swallow and breathe to gradually stop working.

In 2011, one in every 200 deaths in New Zealand was due to MND.

About 320 New Zealand families are affected - 18 of those are in the Bay of Plenty DHB area.