Northland motor neurone disease sufferer's friends plan Spring Fling fundraiser

Loren Hope needs her bathroom to be more accessible as motor neurone disease progresses. Photo / Michael Cunningham

Loren Hope would never put out her hand and ask for help but the Ngunguru Primary School teacher is learning other people don't always take no for an answer.

She has also learned a lot about the challenges of motor neurone disease.

Hope learned in 2016 she has the disease for which there is no cure. There is no "average" MND sufferer but of around 300 New Zealanders with it at any one time, the majority are middle aged and older men.

Hope is in her 30s, and the mother of sons aged 4 and 5.

''I hate pity, I'm a very positive person,'' she said.

But the road ahead is paved with difficulties for this positive thinker and her husband. Her voice is breaking down and she is losing movement.

Before long the family home's ''teeny bathroom'' will need a major upgrade to make it fully accessible.

An estimated $36,000 is needed to enlarge it to take a hoist, a shower to fit a wheelchair, space for a caregiver to move around, handrails, non-slip floor covering and wider doorways.

The Ministry of Health's contribution would only be $8000, Hope said.

''There's an astonishing difference between ACC help for an accident, for example, and the help that applies to people with illnesses. I'm very disappointed about that.''

But her friends, family, school colleagues and community are determined to meet the difference through fundraising.

''We're totally blown away and humbled that so many are willing to help,'' Hope said.

''We're in a really blessed situation because we have this incredible community taking care of us.''

That has been a two-way blessing.

''We want to do this because of what Loren has done for everyone else,'' her friend and school colleague Jo Duff said.

Able to work part-time, Hope teaches Ngunguru school's EarthEd Programme which she developed five years ago.

''It's a unique programme. No other schools have a dedicated ecology teacher,'' Hope said.

''All my life, I've taken the weight of the world's environment on my shoulders. I saw this programme as a way the help young people embrace the ecology of their immediate environment and they will take that out into the world.''

''We provide lots of in-depth experience, incorporated into all levels of their schooling. You can't offer [the concept of] kaitiakitanga without its science and culture, but community engagement is one of the pillars.''

That includes using neighbours' properties for lessons about the bush, wildlife, animal and plant pests, bee hives and birds.

Just across the road is the estuary and coast where pupils learn about and work on protecting water quality, the Ngunguru sandspit and, working with Northland Regional Council, catch the recently arrived, invasive Asian paddle crabs.

But for Hope's home environment, "Team Hope" is planning several fundraisers for the bathroom and, later, other projects.

First up is Spring Fling for Hope, on Saturday, September 15, at the Ngunguru Sports and Recreation Complex — with live music, dancing, DJ, entertainment, food, live and silent auctions, spot prizes, raffles and under-18s banned.

Among donations for auction and raffles so far are a voucher valued at $1000 from JD Jewellers, artworks, a night of luxury accommodation and - not related, the organisers joke - a vasectomy.

There are 350 tickets, at $50 each covering food supplied by a chef, entertainment, carpark security and more. See https://www.facebook.com/springflingforhope/