On his 58th birthday, Tauranga father Darren Bidois received a “devastating” diagnosis of Motor Neurone Disease.

He likens the fatal condition to being a “puppet on a string” where movement in his body is progressively cut off – “I’m pretty much a body in a chair now”.

He shares his story in the hope that one day a cure can be found.

Three days before Christmas in 2020, Kelsie, Matt, and Morgan Bidois were waiting for their parents to come home so they could celebrate their father’s birthday with a pizza night.

Not wanting to ruin Christmas, Darren told his wife Leanne on the way home he didn’t want to tell their children about his Motor Neurone Disease (MND) diagnosis - a condition which has now left him “chair-bound”.

When Leanne walked in the door of their Tauranga home, the children “knew” something was wrong.

“I just had to tell them and it was horrific,” Leanne tells the Bay of Plenty Times.

“It was pretty rough. But it was the best thing we could do.

“In hindsight, they all just dealt with it and then ... we had a good Christmas.”

The Bidois family have shared their story for Motor Neurone Disease Awareness Month in June.

MND is a fatal, rapidly progressing neurodegenerative disease that attacks the nerves that control movement so muscles no longer work. There is no effective treatment and no known cure.

MND affects a person’s ability to speak, move and eventually breathe. The average life expectancy is three to five years after diagnosis.

Darren, 61, says he had symptoms for about a year before his diagnosis, mainly having trouble with his arms while playing sports.

The former New Zealand indoor cricket representative saw physiotherapists and was referred to a neurologist who diagnosed MND - a condition Darren understood well after knowing someone who suffered from it.

“When we got the news, it was pretty rugged really, because we knew, kind of what was coming.”

“Then old man MND comes along with a pair of scissors and cuts a string to your arms and makes them hang. Eventually ... all those strings will slowly get cut.”

His arms were already “useless” and he could no longer do things he enjoyed such as drawing, fishing, or picking up his grandchildren.

“My whole life’s changed. I was a pretty active person before this happened and now, I’m pretty much chair-bound.

“I’m pretty much a body in a chair now, which is pretty devastating to be honest.”

Darren says the main things that keep him positive are his family and friends, most importantly his seven grandchildren.

“I’d like to appear as normal as I can for everybody while I can because I know later on it’s going to get pretty ugly.”

Darren Bidois said he spends lots of time with his three children and seven grandchildren, who all live in Tauranga. Photo / Alex Cairns.

A mechanic by trade, Darren was doing administrative and customer service work at the time of his diagnosis.

He eventually quit due to fatigue.

Leanne - who worked full-time as a receptionist - quit her job in October to become Darren’s full-time carer.

He says the hardest part is knowing there is no cure.

“I know it sounds terrible, but in reality, there’s no hope ... so you just get on with it.”

Daughter ‘devastated’ about father’s diagnosis

Kelsie says she was “pretty devastated” learning of her father’s diagnosis.

She says her father is smart and she hatea thinking he will one day be unable to communicate or move.

“But also I feel really lucky that we know this ... the most important thing is to just spend as much time as possible.”

The family wants to spread awareness about the condition and the work of MND New Zealand.

Darren says MND New Zealand regularly checks in and helps him access physiotherapists and speech therapists.

Leanne and Darren Bidois at their Tauranga home. Photo / Alex Cairns.

“Without them, it would just be so hard. It would be devastating, actually.

“They’ve done such a good job and hopefully one day, it will help find a cure.”

Raising money for MND New Zealand

The family are participating in MND New Zealand’s fundraising initiatives, having a “cuppa tea for MND” and doing an ice bucket challenge on June 23 at Darren and Leanne’s home.

Georgia Bidois – Darren’s daughter-in-law – says they hope to raise $5000 for MND New Zealand, which doesn't receive government funding.

She says four friends and family members will sit in an ice bath for one minute.

If they reach their fundraising goal, three of Darren’s grandsons will do a “mini” challenge, sitting in an ice bath for 30 seconds, she says.

A MND New Zealand press release says a recent study led by scientists at the University of Auckland Centre for Brain Research found that New Zealand had one of the highest rates of MND in the world, affecting more than 400 New Zealanders at any given time.

Most people diagnosed are older than 40, with the highest incidence occurring between 50 and 70.

Interim chief executive Mark Leggett says proceeds from its fundraising initiatives will go towards growing support, information and advocacy for those affected and supporting research for a future free from MND.

Donations can be made on the MND New Zealand website.

-Bay of Plenty Times.