The fate is so terrifying, Bree Wallace cannot bring herself to take a test to tell her if she has inherited the degenerative disease that killed her mother and aunty.
Worrying about whether she has motor neurone disease (MND) makes the 18-year-old cry herself to sleep some nights. Most other nights, it keeps her awake.
When Ms Wallace was 7 her mother, who was 42, died of MND and her aunty died of the same disease in 2020.
Because the genes that cause MND can be inherited, there is a 50% chance Ms Wallace will also get the disease.
"Watching my mum and my aunty go from walking, to a walker, to a wheelchair and then not being able to speak or move their arms — it’s horrible.
"You’re watching your loved one dying and you just can’t help — it’s heart-wrenching."
MND is a fatal, rapidly progressing disease that attacks the nerves that control movement.
It leaves people trapped inside a body that no longer works, unable to speak, move, or eventually, breathe.
There is no truly effective treatment or known cure, the average life expectancy from diagnosis is 34 months and around 400 New Zealanders are affected by it at any given time.
Ms Wallace’s family has dealt with MND for multiple generations.
"I realise what’s going to happen if I get it.
"It’s scary. I’ve cried myself to sleep countless times, thinking that my life could end at the age of 42, just like my mum’s did."
"If I carry the genes, that means my children will have a 50% chance of carrying the genes as well, and I don’t want to spread those genes throughout my family.
"Also, I don’t want my children to see me die like that — I don’t want anybody to go through that."
She definitely wanted to get tested in the future, but right now she was not mentally ready.
"It’s tugging away at me. It plays on my mind every single day.
"I’m just trying to live life to the fullest at the moment."
Ms Wallace has been promoting Motor Neurone Disease Action Month to raise funds for Motor Neurone Disease New Zealand.
The organisation does not receive government funding, despite it being the only charity focused on improving quality of life, providing wrap-around support to make every moment count, funding research and campaigning for people affected by MND.
People can help raise funds by either going "hot" and hosting a morning tea, or going "cold" and taking on an ice bucket challenge.
"The love and support from the MND NZ team is truly amazing," Ms Wallace said.
"They’re just so empathetic, welcoming and supportive."
Proceeds from the campaign will go towards improving consistency of care, providing community-based support and advocacy, and establishing an equipment exchange programme.
It is hoped about $150,000 can be raised by the end of June.
