Kindness 'got us through' say parents

The Brown family, Peter, Ashleigh and Riley at their Alexandra home in August last year. Photo by...
The Brown family, Peter, Ashleigh and Riley at their Alexandra home in August last year. Photo by Lynda van Kempen.
Despite grieving for their 14-month-old son Riley, who died on Thursday from a rare genetic condition, Ashleigh and Peter Brown are thinking of others.

The Alexandra couple have donated Mrs Brown's frozen breast milk, which had been expressed to tube feed to Riley, to Louise Chalmers-Wilson, of Invercargill.

Ms Chalmers-Wilson had asked on social media about a week ago for donations of breast milk for her 4-month-old son Robert, who has a rare disorder called Currarino syndrome.

Robert is facing a major operation in July and Ms Chalmers-Wilson had trouble breast-feeding but wanted Robert to be as healthy as possible leading up to and after his surgery.

Mrs Brown had contacted Ms Chalmers-Wilson last week, offering some frozen breast milk and then contacted her again after Riley died, offering the rest of the frozen milk.

Ms Chalmers-Wilson collected the milk yesterday.

It filled several large boxes and she said it was "an amazing gesture'' by the Browns.

"It would be nice to be able to breast feed but I've had problems with that, so it's great to be able to give Robert any benefits he can gain from breast milk. It's amazing that Ashleigh was able to do this.

"It's a real privilege to receive this and we're sure it'll help Robert with his build-up to the surgery and recovery.''

Ten hours after Riley was born, he started to have seizures.

At six weeks old, he was diagnosed with Zellweger Syndrome, a rare genetic condition that affects only one in every 50,000 or 100,000 babies.

There is no treatment or cure and babies with the condition rarely survive beyond the first year.

Riley surpassed those odds but died peacefully at his Alexandra home on Thursday.

His parents said they had treasured every day of his life and had focused on making as many memories as possible.

They were lucky to experience parenthood and said Riley, their "little fighter'', had taught them so many things.

"We're so grateful for all the support we've received over the past 14 months, for everyone's calls and visits and the general support from so many people. That's truly what has got us through,'' Mrs Brown said.

"It's been amazing and we're so lucky to have been on the receiving end.''

It return, it was nice to be able to do a good turn for others, she said.

● A service celebrating Riley's life will be held in Alexandra on Monday at the Cellar Door.

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