It is a conversation Cheryl Edwards (not her real name) never wants to have; telling her 11-year-old daughter Alison she might not live beyond her mid-30s.
Alison suffers from cystic fibrosis (CF) a condition which has a life expectancy of around 36 years. It is a fact of which she is not yet aware.
"That's the one thing we haven't told her," says Edwards. "Why tell her she could die at 30 when she might live beyond that? But we will have to have that conversation one day; it's something I'm not looking forward to.
"We get on with life. She's a fantastic girl, she's funny and a real go-getter - she's my hero. But every now and then the reality hits you in the guts, it's something that's always there; I'm not as brave as her."
Edwards has been living with this uncertainty virtually since the day of her daughter's birth. "I knew something was wrong from the start. She was not well as a baby and began to lose weight almost immediately."
At two days Alison underwent tests and two weeks later Edwards received the bad news - her daughter was suffering from CF, an extremely debilitating disease that has no cure and is one of the most common life-threatening disorders in children. A 2010 Cystic Fibrosis Association of New Zealand report estimated 20 children are born every year with the disorder.
An inherited condition, its symptoms include failure to gain weight, abnormal bowel movements and lung disease usually resulting in a shortened life span.
It is characterised by thickening mucus in the body which blocks the smaller airways of the lungs. This leads to difficulty in breathing and frequent chest infections. It also blocks the pancreas stopping digestive enzymes from assisting in food digestion, often resulting in failure to gain weight.
Advances in medical research and new methods of screening for CF - some of it funded by Cure Kids and undertaken by Cure Kids co-founder Professor Bob Elliott - have produced treatments leading to an increase in life expectancy and quality of life.
When Alison was born CF sufferers could expect to live for 20 years; now that has risen to the mid- 30s. It is one of a number of ground-breaking medical advances across a range of child health issues made over the last 45 years by Cure Kids-funded research.
Edwards says this research is giving her hope. "They are forever working on a cure and we do hope they can achieve a breakthrough that gives Alison and all sufferers a longer life.
"I was really worried when she was diagnosed. I didn't know anything about cystic fibrosis, it was just the worst thing thinking her life could be shortened," says Edwards.
Alison, who has been in and out of hospital over the years for treatment for chest infections, takes up to 30 enzyme tablets a day to help with digestion and absorption of food. Twice a day she uses a nebuliser, which involves breathing through a pipe apparatus to assist in breaking down her mucus.
Edwards says her daughter is an amazing singer - an activity excellent for her lungs - dances, is involved in lots of physical activity and is adored by her two older brothers.
"Cure Kids has been like another family for us," she says. "It is not just the research they fund; through them we have met many other families going through similar situations."
Money raised by Cure Kids is also going into research in other child health issues. Work being carried out under Professor Jon Skinner at the University of Auckland Medical School into genetic heart conditions is producing positive findings.
Every year up to 100 children in New Zealand die suddenly and unexpectedly from an inherited heart condition. In many cases there are no symptoms which make it difficult to diagnose and treat.
Once a gene is found, thorough testing on other family members who may also be at risk can open the way for preventative treatment.
"Just 15 years ago we didn't know what caused these sudden deaths. That meant there were 100 families in New Zealand every year who had a young son or daughter die and no-one knew why it was happening," Skinner says.
"It is impossible to say how many lives we've saved but we do know we've identified many more of those at risk. Without the funding we've had from Cure Kids there would be no research; we lose researchers overseas all the time and without the money we can't keep going."
Cure Kids CEO Frances Benge says there is still vital medical research needing to be done but it is stalled due to lack of funding. "We're asking for the support of generous Kiwis again this Red Nose Day so we can continue to make a difference to the health of our children."
First held in 1989 this year's Red Nose Day appeal is on Friday and is running throughout November. Last year's appeal raised $1 million to fund child health research projects.
Donations can be made through www.rednoseday.co.nz or text 933 with the word NOSE to donate $3.