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join tŷ hafan’s rainbow run for children like hallie mae

More than 1,200 people have snapped up Rainbow Run places to raise much-needed funds for local children’s charity, Tŷ Hafan.

Rainbow Run Barry

There are still spaces up for grabs and Tŷ Hafan is urging more colourful fundraisers to sign up to Barry’s first ever Rainbow Run.

Taking place on Saturday 7 May, participants will be showered in colourful powdered paint for the 5K fun run on the stunning beach location in Barry Island.

One child who benefits from Tŷ Hafan’s support is little Hallie Mae Jones from Barry.

Eight weeks after she was born, parents Claire and Ben were told their precious new arrival had a rare condition called Cri du Chat (cat’s cry) syndrome.

Affecting around 1 in 50,000 births, children with the condition often cry in a similar way to a meowing kitten due to problems with their voice box and nervous system.

“We knew something wasn’t right during my 20 week scan,” said Claire.

“Doctors said part of her brain hadn’t developed properly – it was pretty terrifying.”

After a difficult birth, Hallie wasn’t breathing and was rushed to intensive care where she was kept in an incubator.

Rainbow Run Barry

Claire said: “When I saw her, it broke my heart – she had a feeding tube and her head was a funny shape. It was really hard to see her like that.”

After a stressful two months, tests revealed little Hallie had Cri du Chat syndrome – a rare genetic disorder caused by part of a missing chromosome.

“We didn’t know anything about Cri du Chat syndrome and struggled to take everything in. She did sound like a kitten when she was crying so it made sense when we were told about it,” said Claire.

Hallie is now five years old. She has a great sense of humour and deals with her condition with incredible bravery, but it has affected her development.

“She has no strength in her legs and can’t crawl or talk but can communicate her likes and dislikes,” said Claire.  “I can’t count how many times we have been in and out of hospital with different problems. One of the worst instances was when we were told Hallie was breathing through a hole the size of a pin.”

In 2013, Hallie was referred to Tŷ Hafan – the hospice for children in Wales.

“I didn’t know about Tŷ Hafan before she had this condition,” said Claire.

“I would be gutted if Tŷ Hafan wasn’t there. Her time at Tŷ Hafan is something for us to look forward to.

“She loves the playground, the swings, the play room and she loves music, films and dancing. She has a wonderful time at Tŷ Hafan. She visibly relaxes when she’s there and that’s so important.

“I love it as well. We get spoilt rotten and it’s like you’re being waited on. We can just chill out and it’s nice for Hallie because she can just chill as well.”

The couple also have an 11-year-old son, Curtis, and he really enjoys Tŷ Hafan visits as well.

“Curtis loves it,” said Claire. “He plays in the hydrotherapy pool, the sensory room and ball pit. It’s lovely that they care for the whole family and make sure siblings are cared for as well.”

She added: “All I can say is that it’s amazing and every penny raised makes such a difference to so many families in need of support.”

For more information, or to sign up for the Rainbow Run, please visit www.rainbowrunwales.co.uk

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