Samarra Wright-Scott was born into a family with a disease that takes control. Motor neurone disease (MND) claims the use of muscles and slowly takes the lives of people with the genetic condition.
36-year-old mum of two Samarra, describes it as; “sharing your body with a monster of a house guest that will not leave.”
When pregnant with her second child, Samarra found out her mother was a carrier of MND, which meant Samarra was likely to have it too.
She received the unwanted diagnosis late last year, “I knew it could strike me one day maybe in my fifties and I thought that wouldn’t be so bad, so being told you’re gonna die early at a younger age is pretty brutal,” she is now one of three people in her family who currently has MND.
Health professionals came to the resolution in late 2017 after Samarra reported her leg twitching, “I thought maybe I’ve strained something in the gym, and I started limping.” But it turned out to be MND, “after the diagnosis I cried and cried and I was just angry screaming, because I had so many plans for my life.”
Her husband, Matt, says it was quite jarring to discover his wife had the disease, “Samarra used to joke about it, so it was quite a shock and I didn’t want to believe it at first, I just wanted to believe she had a dodgy hip.”
Since the diagnosis her life has changed from being very active as a personal trainer and boxing coach, “when it strikes it basically turns your good neurons into bad neurons and kills them, mine started in my hip but eventually it will shut down the muscles around your lungs so you won’t be able to breathe. There’s nothing anyone can do.”
Life with MND is very different, “you’ve gotta be really careful you don’t fall over and hurt yourself, you fall really fast and you can’t always break that fall like you used to.”
Matt also has had to adapt and admits it is scary, “fear is always in the background, I fear for me and the kids and how we’re gonna cope without her, I fear for her.”
Samarra’s 16 year-old daughter Kaytee says she feels a lot of pressure but she's looking on the bright side, "She's taught us to live in the moment, because there's not going to be a lot of those moments in the future."
14 year-old Jimmy is very keen on his sports but Samarra says, “both of my kids have definitely had to grow up quite fast, since I’ve been sick my son has learned how to cook and now he’ll do washing.”
Samarra is relentlessly positive and has not given up her independence; “I’ve seen the bubbliest people get it [MND] and hide away in their room and I thought I don’t wanna be that person I’ve got a family and a ship to run.”
She dedicates a lot of her time to coaching at the local pony club, teaching the younger generation how to ride confidently and says, “it’s my happy place.”
Living in Hokitika, Samarra identifies herself as a ‘coaster,’ “someone who loves their home and is known for their kindness, I had my whole community pull together to help me fundraise for my [disabled] bathroom.”
“I have to be strong for the children, it’s a hell of a disease, if only we could get to the bottom of it it would be amazing.”
Raeoni Wright is Samarra’s Nan and she helps out with the family, she has nursed many branches of the family through MND, “I have to be strong for the children, it’s a hell of a disease, if only we could get to the bottom of it it would be amazing.”
Samarra wants people to get a genetic test to identify whether they have it and improve awareness. The goal is to notify the government of the problem so they know how many people are affected. Both her children have agreed to get tested once they turn 18.
While she does not know how much time she has left with her family she realises, “time and family and everything you love is so precious and we just take so much for granted, but you’ve gotta make the most of it.”