When Emilie Johns' mum picked her up from preschool last July to find yet another enormous bruise on her daughter’s leg, she knew something wasn't right. What she didn't realise was that it would change her family's life forever.
“Emilie had had no fall or bump, and she'd been feeling unwell for a while. So I took her to the doctor and they sent her straight to Starship by ambulance,” says Emilie’s mum Kerry (39), who has two older daughters, Ella (9) and Chloe (7).
A blood test at Auckland’s Starship Children’s Hospital confirmed Emilie (now 4) had acute lymphoblastic leukaemia. Since then, she’s undergone months of treatments that have made her hair fall out twice, temporarily taken away her ability to walk and left her with a string of over 130 beads – one for each procedure she's endured.
“The beads are like a badge of honour for these kids – when their hair grows back and there are no outward signs of the illness, the beads are the kids' living proof of the journey they've been on,” says TVNZ newsreader Bernadine Oliver-Kerby (41), who became involved with the Child Cancer Foundation after the birth of her daughter Maisie (5.)
“As a mum I know how much it throws a household into chaos when a child has to be off school because they've got a cold . So when you look at what families like Emilie's are going through, it puts everything into perspective,” she says.
As Emilie points out each bead's meaning to Amanda Billing, the Shortland Street favourite is clearly delighted to put her name to the charity.
“I'm not a parent yet, unlike a lot of the CCF ambassadors, but this makes sense to me – I'm a part of something that's much bigger than myself," explains the actress , who is involved in the creative side of fundraising – last year she made necklaces and earrings that were auctioned.
“It's very easy to get blinkered in everyday life – to focus on yourself – and that's often not a great thing to do. Here I get to design, do things I'm good at, and see the rewards when these kids and their families get back on their feet. It's hugely rewarding,” says Amanda.
Not that Emilie would have you believe her life's anything but normal. The spirited preschooler puts her hand over mum Kerry's mouth as she's explaining the treatments her daughter has endured over the past seven months. “I was only pretending to be sick, Mummy!” she says, keen to receive the reward she's been promised after the photoshoot – a trip to The Warehouse.
“The problem is infection,” explains Bernadine. “Kids like Emilie aren't out and about, because they have to live germ-free. That's why most people don't realise how common this kind of thing is – they are usually in hospital or at home, in isolation.”
Emilie still has steroid treatment one week a month, which leaves her sick and depressed – her family are heartbroken when she tells them she “hates” her life – and will continue until September 2014.
The family are not sure whether Emilie will go to school when she turns five in December, but they are determined the future will be bright.
“After seven and a half months we are just learning our new 'normal',” says former physiotherapist Kerry, who hasn’t been able to work since Emilie became sick.
“But compared to some families, whose kids are sicker than Emilie, who don't ever get out, whose prognosis isn't as good, I feel quite lucky.”
HOW YOU CAN HELP
- Three children are diagnosed with cancer in New Zealand every week
- Collectively, they undergo around 100,000 treatments and procedures every year
- The CCF receives no direct funding from the government
- Last year 4,208 family members were supported and more than 8000 families and friends visited our Family Places
- Child Cancer Appeal month 2013 runs throughout March. The goal is to raise $1 million to help children with cancer and their families
- Visit childcancer.org.nz to make a donation, or text BEAD to 206 to make a $3 donation.