Team NZ Director Greg Horton has Motor Neuron Disease and his friends and family are raising funds by supporting a walk wearing T Shirts with his picture. / Doug Sherring
Friends prepare to march for Team NZ director fighting motor neuron disease.
As his mates sailed brilliantly to win the America's Cup, Emirates Team New Zealand director Greg Horton was fighting his own tough health battle.
The 48-year-old father of three, who is also a partner at Auckland corporate law firm Harmos Horton Lusk, has battled with motor neuron disease since September 2015.
Although putting his shoes and socks on is a daily struggle as the degenerative condition has affected his mobility and balance, Horton was in Bermuda cheering on the team when they raced in July.
Today , about 500 people, including 75 of his Emirates Team New Zealand mates, will honour him by wearing orange t-shirts printed with Horton's smiling face when they participate in Walk 2 D'Feet MND events in Auckland and London Auckland to fundraise for motor neuron disease research.
Team New Zealand skipper Glenn Ashby has flown from Melbourne to Auckland for it and the team's chief operations officer Kevin Shoebridge will also be there.
Horton said he was overwhelmed by the show of support.
"I'm humbled. It's going to be full of emotion and in some ways quite challenging but it's going to an incredible day and I can't wait."
His friends and family had helped Horton cope with how his life had changed since his diagnosis.
"You have a whole lot of understanding people around you because some days my talking's not very good and other days it's really clear," he said.
Greg Horton (far right, front) celebrates Team New Zealand's America's Cup win with team mates in Bermuda. Photo / Ricardo Pinto / Supplied
"There's lots of dark times when you can kind of crawl into a shell and feel like you have no purpose, or you have no meaning or you have no hope. You certainly go through a phase where you think 'my life has been stolen from me'."
Motor neuron disease is incurable. It damages the nervous system, preventing signals from the brain reaching the muscles.
Although research is being conducted all around the world, scientists still don't know what causes it.
"It's probably the most debilitating disease that people can get in terms of your body shuts down but your mind is totally unimpaired. Everything just gets a whole lot harder," Horton said.
"I'm slowly losing my voice and ultimately at some point I'll probably lose my ability to speak clearly and properly. I can't balance very well. I can only walk 200 to 300 metres in total, after that I need a motor scooter or a wheelchair."
Being less mobile meant he could no longer run around with his young children.
"You can't kick a soccer ball, you can't go for a run, you can't play beach cricket with the kids, you get knocked over by a small wave in the ocean."
Team NZ director Greg Horton has battled motor neuron disease for more than two years. Photo / Doug Sheering
But, Horton says, he's lucky.
The kind of motor neuron disease he appears to have usually progresses less quickly than other forms of the disease which can kill sufferers within six months.
Losing their speech was often the biggest challenges people with motor neuron disease faced, he said, and the fear that one day he could lose his ability to communicate sometimes kept Horton awake at night.
"You can deal with the wheelchair. You can deal with how you are physically. When your speech gets impaired to the point where you can't articulate and you slur your words a lot more you lose a whole sense of who you are and what you've worked for in life. It's a horrible thought."
Horton tried not to let the possibility of losing his speech get him down and instead focused on what he had to be thankful for - particularly his wife and children.
"I've got to have a great attitude and look forward and get through the day and be around for them for as long as I can. Hopefully it's a really long time."
Shoebridge, who has worked with Horton for nearly four years, said he had been inspired by Horton's relentless positivity.
"I think everyone in this team, especially myself, we really admire his courage and his attitude towards everything. He's very down to earth but obviously highly skilled in what he does. He's always had this great, positive attitude he hasn't let [MND] slow him down."
The team was thrilled to be able to support Walk 2 D'Feet MND tomorrow, Shoebridge said.
"We've been a pretty close group for a long time and I think one of the strengths of this team is just the team culture. We sort of work hard but at the same time we have a bit of fun at the same time too."
Half of the money raised at the event would fund research projects being conducted by Auckland DHB and the University of Auckland.
The rest would go towards the Motor Neuron Disease Association, a charity that supports those with the disease.
Motor Neuron Disease - the facts • Motor neurone disease (MND) is a fatal neurological disease that destroys the nerve cells that control the muscles used to walk, talk, hug, hold, speak and eat but does not affect cognitive function • It's incurable • Eventually sufferers are locked in a body that can no longer move • About 100 Kiwis are diagnosed with MND every year - many are middle-aged people who are otherwise healthy • Most sufferers live for 20 to 48 months after symptoms begin but 5 to 10 per cent live for ten years or more • The disease kills two Kiwis every week
