Trust offers holiday to grieving family

CAROLINE KING
Last updated 16:13 09/08/2012
Ruby Hollingworth

HAPPY TIMES: Ruby Hollingworth, 9, pictured with brother Laird, 6. Ruby died last month. She suffered from a rare genetic disorder that is likely to also cause the death of her brother.

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A charitable trust has offered to contribute up to $5000 towards a holiday for a Christchurch family who lost their 9-year-old daughter to a rare genetic disorder.

Helen and Dean Hollingworth's daughter Ruby, one of only a handful of sufferers of Sanfilippo syndrome in New Zealand, died last month from the disease.

Her brother Laird, 6, has the same condition, in which life expectancy is low.

Experts say sufferers of the syndrome, also known as MPS III, lack an enzyme that breaks down complex sugar molecules.

As a result, they are stored in the tissues of the body and vital organs like the heart and brain, eventually causing cognitive and physical decline.

Mazda Foundation Trust chairman Andrew Clearwater said the trust wanted to be able to do "something" for the family.

The trustees felt a holiday would give the family a break away after everything they had been through, Clearwater said.

"Maybe it can make life a little bit easier for them. They're going to go through some tough times again," he said.

"It's just one of those tragic stories. Unfortunately at the foundation, we seem to come across them all the time.

''We can't help everyone out, but that one really touched our hearts."

Dean Hollingworth was lost for words when he found out about the offer.

The family had not yet made any plans when or where they would go for the holiday.

He said they may take a holiday when their Mt Pleasant home, which suffered earthquake-damage, had to be demolished and rebuilt.

Hollingworth said it would be an emotionally tough time for the couple as the home was full of memories of Ruby.

"That might be a really good time to get away from it all,'' he said.

''It could be as simple as going to Hanmer for a few days. It doesn't need to be a big deal. It's something to look forward to anyway." 

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- The Press

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