A disease that doesn't go away

DON SCOTT/The Press

BRAVE GIRL: Nephrotic syndrome sufferer Maddie Collins with her new pony, Coop. She has spent much of her life in hospital.

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Maddie Collins wants nothing more than to go to school like every other six-year-old.

A debilitating kidney disorder means she has spent many more months in a hospital room than in a classroom in her short life.

Maddie was diagnosed with nephrotic syndrome in December 2008 after waking up with puffy eyes the day before a family holiday.

Her mother thought she had hay fever, but the doctor packed them off to Christchurch Hospital, which has become Maddie's second home.

About 95 per cent of children with the disorder respond to steroids, but Maddie is steroid-resistant.

Doctors have tried other treatments, including chemotherapy, but she has not responded and is heading towards final-stage kidney failure, when she will need a transplant.

Maddie managed a term at school when she turned five, but has not been back this year.

Because of her weak immune system, the family cannot go anywhere with crowds, and trips to the movies are made in the morning when the theatres are cleaner.

Sarah Collins says she wants people to understand that not all children battling chronic disease look sick.

"It's about raising awareness of how difficult it is to live with kidney issues," she says. "Typically, you have it for life. Even if you have a transplant, it doesn't go away."

Collins says the time and effort put in to try to keep Maddie well is huge.

Collins has had to stop work and says her other children, aged 12 and 14, suffer because they never know when she will be home or at the hospital.

"It's hard to try to be a normal family when it's not a normal situation," she says.

Maddie retains so much fluid that she is allowed to drink only 400 millilitres a day. This can be reduced to 100ml if she gets too puffy.

Her body has become so used to her not eating during her hospital stays, which amounted to seven months last year, that she has virtually no appetite and has to be fed through a nasal tube at night.

A transfusion tube in her chest cannot get wet, which means no swimming pools, baths or showers.

"Maddie is fantastic. She's been really strong throughout," Collins says. "But she's had enough. She's sick of having a needle in her chest every few days, having a nasal-gastric tube at night and all the different medicines she has to take throughout the day."

Maddie says she tries to be brave, but does not like being sick.

The Christchurch Kidney Society will have a stand about kidney disease in Christchurch Hospital today and tomorrow and a further display in the Christchurch Central Library.

- © Fairfax NZ News