Sarah Collins knows it will take a miracle to save her gorgeous daughter Maddie, but instead of just waiting to see if it happens, the dedicated Canterbury mum is moving heaven and earth to make sure it does. “Time is one thing Maddie doesn’t have on her side,” she says.
At the tender age of 13, Maddie is in end-stage kidney failure. Her parents, Sarah and Adam Collins, have been told she is 30 times more likely to die of her illness than a child battling cancer. “We know the stats and we’re doing everything in our power to fight them,” says Sarah, 44, who also has two older children, Tomas, 21, and Georgia, 19.
Maddie has a rare kidney disorder known as focal segmental glomerulosclerosis. In 2010, her first kidney was so badly damaged, it was removed. Her second was taken out the following year and Adam donated one of his, but Maddie’s body later rejected it.
Today, the only thing keeping the horse-mad schoolgirl alive is a dialysis machine she has hooked up in her bedroom, below glossy pictures of horses cut from magazines and a ribbon she won last year.
Although Maddie has been sick for most of her short life, she is slowly running out of options. Because she developed donor-specific antibodies, doctors have told her family there is only a two percent chance she will match a donor kidney if one ever becomes available in New Zealand.
Maddie’s best chance is an overseas donor, as the global gene pool is larger, and her family is now trying to raise $350,000 through their Givealittle page to make that dream a reality. “What price do you put on your own child’s head?” asks Sarah.
She and Adam, 45, thought Maddie had hay fever when she woke with puffy eyes just before her fifth birthday. But her protein levels were through the roof – and so began her eight-year merry-
go-round of surgery, low-grade chemotherapy, steroids, infusions and dialysis.
Without functioning kidneys, her little body can quickly swell by an extra 10kg in fluid. Because there are no paediatric kidney specialists outside of Auckland, Maddie is cared for at their rural West Melton home by her mother.
Every morning, Sarah weighs Maddie and takes her blood pressure. She administers her medication and hooks her up to the dialysis machine, which can run for 12 hours a day. “It’s not unusual for the alarm to go off 10 times a night if there’s a problem,” tells Sarah. “I sleep in two-hour blocks.”
Because Maddie struggles to get rid of excess water, Sarah limits her fluid intake to 500ml a day. “As you can imagine, Maddie is always thirsty – she craves juicy things like oranges.”
A year and a half ago, Maddie was well enough to go camping with her parents in Balmoral, Canterbury, where they had a chance encounter that kicked off the quest for overseas treatment.
“We met an elderly couple and I told them Maddie’s story,” says Sarah. “It turned out one of them had a sister in the United States who was a nephrologist.”
Sarah made contact with the kidney specialist and was told about a transplant programme in California. From there, the couple did further research and came across a ground-breaking programme in Maryland.
They now need to raise funds to get a life-saving transplant for Maddie in the US, but in the meantime, she’s been accepted for preliminary tests.
“Adam and I had a few difficult late-night conversations about whether we could manage it,” says Sarah. “But in the end, we thought it’s all or nothing – we can’t stop now.”
Sarah’s best friends, Diana Wylie and Karen Scott, both 45, have swung into action, raising an incredible $120,000 in only six weeks. “They are truly amazing and I am just so grateful,” says Sarah.
And Diana – who has known Sarah for 25 years – is also getting paediatric dialysis training to give her friend the odd break. “She knows I’ve been exhausted for eight years,” laughs Sarah.
While the fundraising duo works its magic, Sarah cares for her daughter around the clock.
A top priority is keeping Maddie’s health stable so she is well enough to travel. She has only managed one full week of school this year, but on a good day, she has riding lessons at Carnmore Equestrian in Christchurch.
“Horses are a magic green pill that are physically and psychologically amazing for Maddie,” says Sarah, adding that her daughter recently got her own pony named Trig.
In the meantime, her family is enjoying precious time together and doing what they always do – fighting for Maddie. Sarah concludes, “We’ve been battling for eight years and there’s no point stopping now.”