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Playtime for girl with rare genetic disorder

A schoolgirl who suffers from a rare genetic disorder is finally able to play outdoors.

Annabelle Urch was born with a condition which means part of a vital chromosome in her brain is missing.

As a result, the seven-year-old suffers from a wide variety of illnesses including epilepsy, low muscle tone and a heart murmur, for which she sees 13 specialist consultants, including a paediatrician and physiotherapist.

When the Urch family moved to Kingarth Avenue, Seaburn, they could not let Annabelle play in the garden because of uneven concrete, which she could easily trip over.

But after Pennywell-based charity Hope 4 Kidz heard of her plight, they sprung into action and created a beautiful grassed garden, complete with a wooden playhouse.

"The garden was a mess before," mum Andrea, 40, who is married to John, 44, said.

"Concrete was sticking up everywhere, it was overgrown and there were holes everywhere. I couldn't even hang the washing out."

She added: "Annabelle thinks it's great now. She absolutely loves it.

"Before, she was not able to go outside at all and now she's got her toys out there and her trampoline.

"The trampoline helps to strengthen her muscles and improve her balance, so it's helping her as well."

Annabelle was diagnosed when she was about one-and-a-half after months of tests.

By the time she was five she'd undergone surgery to implant false muscles in her eyes to save her deteriorating sight and four other operations to help her hearing.

During the last couple of years Annabelle has defied doctors' predictions by starting to speak and taking her first unaided steps with the help of a special pair of shoes.

Viv Watts, chief executive of Hope 4 Kidz, said: "Annabelle is an amazing young girl and it was heartbreaking to think that she couldn't play outside like other children because of her genetic condition.

"We have been very conscious throughout this project that having a safe and secure garden to play in would make a huge difference to Annabelle's life."

Hope 4 Kidz raised cash for the garden through one of its regular fund-raising evenings.

The turf was bought by the charity on a discounted rate from Thompson's Building Centres and was laid by volunteers from Sunderland-based environmental charity Community Environmental Education Developments (Ceed).

The playhouse was erected free of charge by MGT Landscaping of Pallion and sits on top of concrete paving stones which were also supplied for free by the firm.

Andrea, who also has a son Jamie, 23, added: "We're just so grateful to everyone who has helped."


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Tuesday 07 February 2012

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