Living with the knowledge any day could be your last is no easy feat.
But for two Oamaru brothers, it is a burden they and their family have had to carry for over two decades.
Andrew (26) and Matt Willetts (23), of Oamaru, were born with muscular dystrophy (MD), a genetic disease.
The severity of the disease could change, Andrew said, and not everyone diagnosed with MD experienced it in the same way.
The way the disease predominantly impacted both brothers was through constant waves of fatigue, sometimes forcing them to seek support from wheelchairs, and once their muscles were injured, they did not rebuild, effectively leaving holes where there should be mass.
September is Muscular Dystrophy Association awareness month, and both men want to raise awareness about the conditions the association cover, and to advise there is support available.
Andrew works as a teacher aide at Papakaio School and Matt is working on starting his own company, hoping to use his design and photography skills.
Both have experienced forms of discrimination from a lack of facilities and understanding at school, at work and when trying to find work, because people do not understand the disease.
Matt said he wished he had a job.
“People jump the gun and think you’re scary. I’m still applying for jobs and the answer is still ‘no’.”
Andrew trained as a primary school teacher.
“I did four years and gave up. The fatigue caught up with me at year four. I wake up with my muscles feeling exhausted. I’m not tired, but my muscles are tired. It’s like running a cross-country.”
Andrew was diagnosed at 3 and his brother was diagnosed at 8 months.
The brothers said they were told by their parents when they were younger their life expectancies were low, but they have surpassed expectations.
Andrew said his parents were told neither of their children would make it to 18.
“Dad said Mum said ‘No-one is going to tell us what our boys are going to do, so stuff them. It’s going to be a hard life – stuff life.”‘
Both men had dealt with emotional issues because of their disease.
Andrew said counselling to help live with the disease had been helpful.
“I was angry about a lot of things. I blamed Mum a lot. She’s a strong woman. I told her I hated her because of it. It comes down to the X chromosome line. As Mum says, I chose the wrong X. It’s morbidly funny.”
Andrew said the disease impacted his romantic life.
“It scares people off. It’s all good and then you have to ask yourself, ‘Do you tell them?’ They get freaked out.”
Matt has recently married.
His husband, Hamish Maddock, said he tried to put the disease at the back of his mind but it was not always easy.