At just five years old, Poppy Shelton has already been hospitalised three times because of cystic fibrosis, and now she is selling chocolate fish to help others with the genetic disease.
She points out tiny scars on her arms where intravenous lines have been inserted and chats about the percussion-style physiotherapy that is aimed at loosening the mucus in her lungs.
Her mother Sophie Shelton knew little about CF when Poppy was born, but since then she has been part of a group that successfully lobbied MPs and Pharmac to fund medication that helps keep people with the condition out of hospital.
Poppy has been involved in CF awareness campaigns for years, featuring in a Christmas appeal when she was two. The school holidays prompted her to start her chocolate fish fundraiser early for the May awareness campaign, setting up on her street and later outside Woolworths in Richmond.
For Sophie and her husband Chris it was a steep learning curve when the heel prick soon after Poppy’s birth revealed she had CF. It meant both parents are carriers of the CF gene - on average, about 10 babies are born with the condition in New Zealand each year.
“It just knocked us for six – what does it mean, what do our lives look like now and how do we keep her safe?” Sophie says.
The condition is caused by mutations in the gene that result in thick, sticky mucus damaging the lungs and digestive system. This leads to chronic infections, breathing difficulties and problems absorbing nutrients, with no cure. However, Sophie says the medication now available is improving both life expectancy and quality of life.
Poppy has mild CF and a fully-functioning pancreas, meaning diet is less of a concern. But mucus in her lungs and bowels provides an ideal breeding ground for bacteria.
“She had 13 weeks back-to-back with antibiotics when she was two years old and she was still really sick, so she ended up in hospital where they pumped her with antibiotics straight to the heart.”
Every day, the focus is on keeping her well, and as Sophie says: “When you’re five, hygiene isn’t top of your list”.
The CF mascot, Fred Bear, sits alongside Poppy at her chocolate fish stand. Fundraising helps support families during hospital stays and goes towards the costs of activities such as swim lessons to improve lung health.
