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Being Me: Te Huia Apaapa
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Being Me
The quintessential Attitude episode. Being Me tells the story of remarkable individuals who face the...
Being Me: Juanita Willems
Pre-Christmas Juanita Willems is flat out, collecting, wrapping and distributing presents for foste...
Being Me: Bailee Lobb
Installation artist Bailee Lobb uses her colourful works to explore lived experience of disability, ...
Being Me: Ripu
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Being Me: Claire
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Being Me: Jono
At birth, Jono Nelson was given just 24 hours to live. Now the Timaru-based hand cyclist, who lives ...
Being Me Alix
Alix Generous has spoken at the United Nations, made a significant contribution to science, given tw...
Being Me: Veronique Theberge
Five years on from an acquired brain injury due to encephalitis, Veronique Theberge is training for ...
Being Me: Kiranjit Singh
Tetraplegic, Kiranjit Singh, is competing to qualify for the 2024 Paralympics in Para-sport shooting...
Being Me: Sam Smith
Sam Smith is a comedian and a new dad. He doesn't take life too seriously but he's just been diagnos...
Being Me: Aidan Terpstra
Aidan’s life changed forever when he was knocked out with a king-hit punch. The injury to his brain ...
Being Me: Susan Williams 8/5/22
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Being Me: Hayley
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Being Me: Devon Briggs
Para-athlete Devon Briggs was born with severe clubfeet, twisted backwards. The 18-year-old has end...
Being Us: Liam and Shane
Liam has Down Syndrome, and while technically Shane is teaching him life skills, Liam's the one who'...
Being Me: Dillon Maydon
Dillon's life was altered at just eighteen when he was diagnosed with Friedreich’s Ataxia, a rare ge...
Being Us: Andrey and Eilish
Best friends Andrey and Eilish are the Yin to each other's Yang and would be lost without one anothe...
Being Me Nick
Nick Chisholm is a body builder whose body is paralysed, a talker who spells words out with his eyes...
Being Me: Eltje
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Being Me: Cyrus
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Being Me: Gigi
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Being Me: Marfan Syndrome
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Being Me: Danielle Aitchison
Danielle Aitchison was born with Cerebral Palsy. As a child she struggled to walk, but her family en...
Being Me Sam
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Being Me: Heather
As Heather Lawson turns heads while walking the streets of Melbourne with her dressed-up walking can...
Being Me: Cory
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Being Me: John
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Being Me: Cody Steps Up
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Being Me: Ian
Ian Stewart is a flamboyant 24-year-old with an eye for fashion, beauty and soap operas. But when dy...
Being Me: Jared Flitcroft
Jared Flitcroft is a filmmaker, businessman, family man, and he is Deaf. Overcoming barriers to achi...
Being Me Shakti
Shakti Krishnan is leaving his family to pursue tertiary life in the big smoke, and to prove to his ...
Being Me: Brent Eyskens
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Being Me: Lusi
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Being Me Freedom
Freedom was diagnosed with eye cancer at three months old, having both eyes removed by age five. Now...
Being Me: Robbie
Robbie Francis is 27, and doing her bit to change the world. She's bringing together disability, sus...
Being Me: Carlos
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Being Me: Geneva
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Being Me: Petra
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Being Me: Josh Davies
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Being Me: Jason
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Being Me Rex
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Being Me: Steff Green
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Being Us: Nathan and Michael
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Being Me: Eamon
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Being Me: Brylee
At six, Brylee Mills lost her arm, and has been coming to terms with it ever since. She's embarking ...
Being Me: Rachael Leahcar
Australian singer-songwriter, Rachael Leahcar, was born with retinitis pigmentosa and at 25-years-ol...
Being Me: William
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Being Me: Erica
Born with a rare condition that affects her outward appearance, Erica Perry proves it’s what’s on th...
Being Me: Rachel Māia
Rachel Māia lives in constant pain, considering amputating her leg to reach new heights.
Being Me: Barney Looks Back
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Being Me: Samarra
Samarra Wright grew up fearing she’d get MND - it killed her mother and many of her wider family. H...
Being Me: Jack
At 18, Jack Brown made a decision that would put him in a wheelchair for life. Facing his new realit...
Being Me: Sarah
Though born with CHARGE syndrome, 22-year-old Sarah Dalton doesn’t let it define her. She’s an avid ...
Being Me: Joshua
Joshua Sade-Inia is a burns survivor. The scars, which cover almost half his body represent his ins...
Being Me: Ming Ming
Blind since birth, Ming Ming has never let that stop him being involved in everything from cricket t...
Being Me: Kasem
13-year-old refugee Kasem lost his leg and much of his upper arm in a bomb attack in Syria, which al...
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.”
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Day one of the 2020 Tokyo Paralympics sees our athletes in the pool, on the cycling velodrome and on...
Paralympic Highlights Day 02
Powerhouse Sophoe Pascoe begins her gruelling campaign at the Tokyo 2020 Paralympic Games, with New ...
Paralympic Highlights Day 04
Lisa Adams throws a new Paralympic record for gold, Danielle Aitchison qualifies for her sprint fina...
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The single kiwi performance on day five ends in a silver medal with a superb performance on the trac...
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