A Queenstowner with life-threatening cystic fibrosis may one day be thanking his brother for curing him.
Queenstown’s Charlie Legge, 5, is understood to be the only Queenstowner with cystic fibrosis out of 500-plus sufferers in New Zealand.
However, in the midst of the Cystic Fibrosis Association’s annual awareness week, hope for a cure is high.
Clinical trials at the University of Melbourne aim to show that an umbilical cord blood transplant – ideally from the sibling of a child with cystic fibrosis – can treat the condition by regenerating lung cells.
When Charlie’s brother Sam was born two years ago, Sam’s umbilical cord blood was collected immediately after delivery.
Sam’s blood is now cryogenically stored by CordBank, which provides a free service for Kiwi families who have a child with cystic fibrosis.
Charlie’s mother Kate Legge says her midwife suggested saving the cord blood when she gave birth to Sam.
Kate suggests all women, if financially able to, should have their first born child’s stem cell-rich umbilical cord blood stored for future potential medical uses.
“Gene therapy can help children with all sorts of conditions,” she says.
Cystic fibrosis seriously affects both lung function and the digestive system.
Charlie – who started school in June – receives 20 minutes of physio when he wakes up to keep his lungs clear of mucus build-up and takes enzyme replacement tablets with each meal to aid digestion.
“Physiotherapy, medication, nutrition and exercise are four important things,” Kate says.
“Charlie swims, likes his scooter and wants to start ice skating, and we’re going to get a trampoline for him.
He’s extremely healthy and he’s never been hospitalised which is very unusual for a five-year-old with cystic fibrosis.”
Few sufferers in the 1950s lived to attend primary school, but improved medical treatment means life expectancy is now 40-plus.
“I definitely think there’s going to be dramatic change with cystic fibrosis [cures] in Charlie’s lifetime,” Kate says.
The Cystic Fibrosis Association’s annual awareness week runs this week.