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Samarra Wright watched her mother die of motor neuron disease, along with numerous members of her extended family, and had hoped she would dodge the rogue gene.
Sadly, the mother of two former personal trainer was diagnosed with the same disease seven months ago, and already the once-active horse rider and instructor is now largely confined to a wheelchair.
She is the latest in a long line of Wright family members to suffer from the rogue gene SOD1, which originated from Scotland.
The fatal, rapidly progressive muscle wasting disease now spans six generations of the Wright family. Mrs Wright-Scott is one of three West Coast family members currently living with it.
Since her diagnosis she has been researching the family history as far back as her great-great-grandmother, Gertrude Maxted, of Blenheim. She married Buller man James Wright in 1901 and the couple went on to farm at Cronadun.
Three of their eight children carried the MND gene.
The Wrights later shifted to Greymouth and South Westland.
"From then on it spread to 20 other family members," Mrs Wright-Scott said.
Mrs Wright-Scott said those who carried the disease had a 95% chance of getting it. It normally strikes people in their mid to late 40s.
At first when she started tripping over and experiencing muscle twitching and fatigue she put it down to something else. However, she now recognises they were early symptoms of the disease.
The Wright family has a strong history on the West Coast in aviation, hunting, the police force and horse racing.
Mrs Wright-Scott has continued that legacy as a former racehorse rider and trainer. She has also been heavily involved in showing, rodeo riding and other equestrian events, including judging local horse shows.
While she can no longer ride due to her illness, she has continued tutoring young riders as one of the lead instructors for the Greymouth Pony Club.
"Penny Jones, who is a staunch hand in the club, decided to take me on as a instructor. The club has huge competitions coming up, such as the top of the South Island teams event and Springston Trophy, and current riders competed (in Hawke's Bay) at the Horse of the Year."
She has also picked up the torch of her late cousin, Greymouth man Murray Wright, who worked to raise awareness of MND 16 years ago.
She has been holding talks at Westland High School, and another is planned at John Paul II High School to educate young people on the disease and dispel some of the myths.
Ninety per cent of all diagnosis are sporadic; the other 10% is passed on genetically.
"New Zealand has the worst rate for MND in the world and that is expected to rise 40% in the next 20 years. It is labelled one of the most deadly diseases in the world.
"The disease affects the brain and spinal cord by attacking nerve cells controlling the muscles that enable us to move, speak, breathe and swallow, to undergo degeneration and die."
Most people who contract MND die within two to five years.
As well as raising awareness of the disease, the Hokitika woman has also held a number of events to raise money for the Centre for Brain Research at Auckland University.
Her advocacy role and volunteering keeps her busy -- and positive.
"A terminal illness doesn't always hold you back. I want people to see you can still get out and do things."
She is also in contact with sufferers all over the world who follow closely the scientific progress being made towards a cure.
"Unfortunately, I won't see it in my time but knowing that there is going to be a cure by the time the next generation comes through, and that there will be a cure in general not just to help our family but others, keeps me positive."
By Janna Sherman