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Last updated 08:18 28/06/2012

KIDNEY CAMPAIGNER: Elaine Simons founded the support group Kidney Kids because she didn't want anyone else to go through what she had.

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Bay Chronicle

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It's every mother's worst nightmare.

Not one but two daughters born with extraordinarily rare genetic kidney conditions.

It's something Elaine Simons and her girls Jennifer, 31, and Rebecca, 26, live with every day.

Rebecca gets by with about half of her kidney function and can lead a reasonably normal life.

But Jennifer needs a transplant and undergoes dialysis three to four times a week at Middlemore Hospital.

Mrs Simons says information about kidney illness was difficult for parents to come by when her daughters were growing up and many of the doctors treating them weren't interested in helping her understand what was going on.

So she founded Kidney Kids – a support organisation for patients and their families.

"When Jen was born I was more or less told I was neurotic, over-anxious and a problem mother because I was a nurse and it was my first child," Mrs Simons says.

"The feeling of not knowing causes stress, more so with a little knowledge.

"It's just as important to help the mother cope with her anxiety as it is to treat the patient."

Jennifer was seven when Mrs Simons decided to do something about it.

"I just didn't want anyone to go through what I did," she says.

Kidney Kids started off as a small group of parents giving support and information to a few families who'd heard about it through word-of-mouth.

Mrs Simons spent hours on the phone speaking to worried mums and dads.

"Just having someone to listen to you is really important," she says.

Jennifer's need to have treatment at home meant Mrs Simons stopped working full time for the charity in 2009 but she is still a member of the board despite having a serious back condition.

Kidney Kids now deals with around 1500 families and runs an annual camp where groups of teenagers get the chance to do things like bungy jumping and go-karting.

"It's about giving them experiences other kids their age get to have but they don't feel they can do, or their parents are too frightened to let them do," she says.

The camps also give the children the opportunity to be together.

"That's what these kids really need. They go through a lot of challenges, especially in the teenage years when they can become non-compliant with their medication, which can mean they miss out on transplants. They just want to be normal."

Mrs Simons says the biggest challenge for the organisation has always been funding which is why it is so reliant on New Zealanders giving to fundraising efforts like Project Kidney.

The project is a joint initiative between The Mad Butcher and Suburban Newspapers Community Trust, The Bay Chronicle and Kidney Kids to pay for four haemodialysis machines to be installed in a new paediatric haemodialysis unit at Starship.

Mrs Simons says her role with Kidney Kids has been hugely rewarding. "When a lot of these kids were born their parents were told they wouldn't live. To see them grow from babies to young adults is fantastic."

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