It has been nearly nine years since Maddie Collins was diagnosed with kidney disease. Bridget Rutherford reports on the battle to give the teen a better life before it is too late
It was a normal day at the end of October 2008 and the Collins family was preparing to go camping at Okains Bay.
But five-year-old Maddie woke up that morning with puffy eyes.
Her parents Sarah and Adam didn’t think anything of it.
They had just moved to West Melton from Spreydon, wanting a more rural lifestyle.
“We thought ‘great, we’ve just moved rural and she’s allergic to grass and hay’,” Mrs Manson-Collins said.
They took Maddie to their GP, who said she may have something called nephrotic syndrome – a kidney disease which causes the body to excrete too much protein in urine.
“I just said ‘oh, don’t be silly, just give us some antihistamines, we’re going camping tomorrow’. And he said ‘I’m very serious, you need to take her to the hospital now’.”
The family didn’t go camping. And they haven’t been since.
Since then, the 13-year-old has undergone more than 50 operations, been on life support twice, had both kidneys removed, one failed transplant and undergoes dialysis every night.
She has been in hospital more than 300 times – the longest stint was for four months – and travels to Auckland’s Starship Hospital routinely every seven or eight weeks.
“I do dialysis 12 hours a night, every night,” Maddie said.
“When we go away we don’t typically take the machine, so we do manual bags – four over the day. It’s annoying because you can’t have sleepovers, unless you want to do manual bags, but I’m not allowed to do it.”
Maddie’s parents and a family friend are the only people who can operate her dialysis machine. They have two generators just in case there is a power cut.
The first time Maddie was put on life support was six months after her diagnosis.
She had been on steroids and low-dose chemotherapy drugs, then one night, she woke with a sore tummy and they took her to hospital.
She had spontaneous bacterial peritonitis, where all the fluid around her organs had become infected.
After a week in the high dependency unit, Maddie was transferred to the ward.
Things were looking up and Mrs Manson-Collins was sent home to get some sleep at 8.30pm.
At 11pm, the hospital rang to say they had transferred Maddie back to HDU, but said there was nothing to worry about. Then, at 5.30am, the hospital called again.
“They said ‘Sarah get here now, don’t get a coffee, don’t have a shower, just get in the car and get here now’.”
The infected fluid had overflowed into Maddie’s lungs.
The five-year-old was gasping for breath and transferred to the intensive care unit where she was put on life support. She was transferred to Starship where she stayed on life support for a week.
In spite of the set back, the family and doctors were optimistic they could save her kidneys.
But in December 2009, Maddie needed a port inserted in her chest so medication could be injected easily.
“I went into recovery to find them resuscitating her,” Mrs Manson-Collins said.
She was put back on life support and her kidneys could not be saved. Six months later Maddie had her first kidney removed.
They started the process of getting on the organ donor list.
Both Mr Collins and Mrs Manson-Collins were tested to see if they were matches, prompting another devastating blow for the family 10 days out from Christmas 2009.
Mrs Manson-Collins had to do a routine mammogram as part of the process, which discovered she had breast cancer.
“I said to her ‘have you found something’. And she said ‘did you come by yourself?’ And I said ‘did you find something?’ She said ‘yes, you’ve got cancer and it’s really bad.’”
Within seven months, Mrs Manson-Collins had a mastectomy and chemotherapy, and Mr Collins donated one of his kidneys to Maddie.
“It was pretty rough on our older two children – is mum going to die this year from cancer? Is my sister going to die this year with renal failure?”
She said it was hard to juggle treatments, but Maddie’s health came first.
Although Mrs Manson-Collins has been cleared of cancer, she still has regular oncology appointments.
At nine, Maddie finally started school at St Margaret’s College.
But they began to see signs that Maddie’s body was rejecting her father’s kidney. She became very unwell and they had to remove it.
Now, she is solely reliant on the white dialysis machine that sits next to her bed.
“There has been some really scary moments where we think, ‘wow, is she going to come out of it this time? Are we nearing the end?’ We’re pretty open about dying and death and Maddie’s fully aware of those implications, and that is a reality for us,” Mrs Manson-Collins said.
Maddie said she did not like to think about death. But sometimes she had to.
When she first had her antibodies tested, there was a two per cent chance of matching anyone in New Zealand.
“We realised we wanted more for Maddie, we wanted life. Just to sit here and wait for a kidney is not okay for a child, dialysis isn’t great for a child, it isn’t great for an adult.”
They started looking for alternative and visited The John Hopkins Hospital in Baltimore, United States, which has been looking at new kinds of transplants.
But it will cost $750,000. They have raised just under $300,000.
Maddie’s siblings Tomas, 21, and Georgia, 19, do not match, but they could take part in a “paired exchange” where they donate a kidney and Maddie can get an American one.
Mrs Manson-Collins said they were “blown away” with the support they had received.
“As much as it’s about fundraising for Maddie, it’s also about raising awareness of a lack of organ donation here in New Zealand and what we can do to improve that system.”
Maddie’s condition has taken a toll on the family.
Mrs Manson-Collins gave up her job as a logistics manager for a national and international race car team four months after Maddie’s diagnosis.
Mr Collins was a race car engineer for Toyota Racing Series and Formula 5000, but has stopped working.
“It’s got to the point now we’re just both so exhausted because it’s been going so long. It takes two of us to keep on top of everything,” Mrs Manson-Collins said.
“Financially, it’s taken a huge toll. Before Maddie was diagnosed, we were both working, we had a retirement fund and retirement plans. That’s all gone now.”
She said Georgia, who works at footwear retailer Hannahs while she decides what to study, and Tomas, an electrician apprentice, had been “amazing” and were very protective of their sister.
The family doesn’t have expectations because it is too disappointing if it doesn’t happen.
The family suffered a disappointing blow earlier this year when they were offered a bogus $1.5 million pledge to help get Maddie to the US.
Maddie hasn’t been to school in months. She’s been too sick.
But she is about to go back for four days a week, with a mix of Southern Health School and St Margaret’s teaching for the “social interaction”.
She wants to become a vet and has already been helping out at her local clinic.
“We went to the vet to get my cat fixed and as soon as I walked in I thought ‘I really want to work here, it’s so cool.’ One day I asked if I could come and work for a day, I watched surgeries and got a dog’s teeth cleaned, did vaccinations, and I loved it so much, so from then on it started.”
She is used to being around animals, they have three labradors, a poodle, cats and her pony Trig, who she recently won the North Loburn Equestrian spring dressage tournament on.
Although riding may come with some risks, her parents decided they would not wrap her in “cotton wool”.
Maddie wants to help others by raising awareness for her disease and organ donation.
“There are people out there who are unfortunate to have this disease and it’s good to help.”
•To donate or find out more, visit maddiecollins.co.nz