People with inflammatory bowel diseases are taking their fight to Parliament tomorrow, asking for businesses to be required by law to let sufferers use their toilets.
At their head is one brave 13-year-old girl from Lower Hutt.
Nicole Thornton was 8 when she was diagnosed with severe Crohn's Disease, a chronic inflammation of the bowel which can cause diarrhoea, bleeding and excruciating abdominal pain.
"I've always had stomach cramps and needed to go to the toilet a lot ... but by then I was finding it hard to go to school. I was really sick, I was always tired and weak and my hair was falling out, and I lost weight."
People with IBD often need to use the toilet at short notice, or risk public embarrassment.
Thornton's never had an accident in public but was once caught out at her own birthday party.
"I was giving my friends a tour around our farm and suddenly thought, 'Oh my god, I need to go to the toilet.' I was sprinting back but it was too late."
Knowing she could go shopping with friends and feel confident would mean "to the moon and back", she said.
In January 2017 she presented a 3000-strong petition to Parliament asking for a law change so businesses must let people like IBD sufferers and those with ostomy bags use their staff toilets.
Thornton will be among a group addressing the Health Select Committee at 10am in support of the petition, including Kate Montgomery, who has an ostomy bag.
People living with IBD often hold an "I can't wait card" but this would give it legal weight.
"If the law gets passed anyone can walk in, show their card, which has a quick description of the disease and why they need to go, and hopefully be let in," Thornton said.
"There are over 20,000 New Zealanders living with this silent disease. For them all to feel safe, secure and knowing that they have a secret weapon they can pull out, a card saying 'I need access to toilets', would mean so much."
Thornton was inspired by Ally Bain, an Illinois 14-year-old with Crohn's who fought for legally mandated toilet access in the US. The Restroom Access Act, known as Ally's Law, passed in her state in 2005. Bain wrote to Thornton offering support last year.
Crohn's and Colitis New Zealand Charitable Trust (CCNZ) trustee Dr Richard Stein, a gastroenterologist at Hutt Valley DHB, called Thornton "an amazing young woman".
"She's brave, she's well spoken and she speaks from the heart," he said. "When you see someone like Nicole who's young and has a chronic disease and has to live with it their whole life, battling the symptoms, it makes an impact."
Patients had told him if Thornton gets the law changed it would make a massive difference in their lives. "It would really open the world up to them."
About Inflammatory bowel disease
New Zealand has one of the highest rates of inflammatory bowel disease - encompassing Crohn's disease and ulcerative colitis - in the world.
• One in 227 New Zealanders has the disease
• Onset is usually between 15 and 35
• About 20 per cent of those affected are children
• It costs the country about $245 million a year