By Pamela McGowan Health reporter

Last updated at 09:02, Friday, 03 April 2009

Six-year-old Harley Andrews was born with severe disabilities which mean he can’t walk, talk or even eat.

Harley, centre, plays with the help of dad Peter and brother Owen

Looking after him is a full-time job for the whole family and makes simple things, like a holiday impossible.

And sometimes parents Peter and Melissa can’t help but feel their other three boys lose out. But now, thanks to the Eden Valley Hospice, the family can finally plan their first half-term break.

They will go away during the May school holidays while Harvey goes for his first full-week of respite at the children’s hospice – built following a £1 million public fundraising appeal.

Prior to the new wing opening in 2007, Harley, from Durdar, Carlisle, already benefited from weekly daycare at the hospice.

But, thanks to the Jigsaw Appeal, he can also benefit from overnight care. This means his brothers can do some of the things they otherwise miss, such a trip to the cinema or bowling.

Meanwhile, the family can rest assured that Harley is in his element at the hospice, where he loves the new sensory room and all the staff.

His parents find the service so valuable that they are determined to support it and have launched their own fundraising campaign to help towards running costs.

They will both take part in the hospice’s sponsored zip slide later this month, while Mrs Andrews and her team – named Harley’s Angels – are going to enter the Carlisle Midnight Walk in June.

Harley’s disabilities are a result of Twin to Twin Transfusion Syndrome, a condition which means one child gets all the goodness from the placenta while the other gets none.

Mrs Andrews, 31, explained that he stopped growing at 23 weeks while brother Harrison continued to thrive. When they were born, at 32 weeks, Harley weighed just one pound nine ounces while his twin was a whole three pounds heavier.

Harrison is a now a healthy six-year-old, while Harley suffers from cerebral palsy, epilepsy and severe sight problems.

All of this means that the youngster’s interaction is very limited and he needs constant care and attention.

But despite this, he is very much a part of the family and they do everything they can to ensure he is happy.

“We are all for quality of life and you couldn’t find a happier kid. As soon as you see him it makes you feel better, he has a wonderful smile and an infectious laugh,” said his mum.

Harley attends James Rennie School in Carlisle four days a week while he spends every Monday at the hospice.

Although he can’t walk and can barely see, his parents say that as soon he gets to the hospice he knows where he is and shuffles on his bum to the sensory room, where he loves the lights and vibrating tubes.

Mr Andrews, 48, said that his brothers are brilliant with him and are always helping out – which is why they all deserve a holiday like their friends.

“They do start to question why they can’t do all the normal things their friends do. It’s only when Harley’s not here that you realise how much there is to do for him.

“You just get on with it but they deserve a holiday.

“It will be difficult leaving him but he loves the hospice so it will be like a holiday for him too.”

The zip slide challenge takes place on Sunday, April 26 and will see the pair reach speeds of up to 30mph during the 800ft descent across the River Eden.

Mrs Andrews, who works at Houghton Hall craft shop, is dreading it as she admits to being terrified of heights.

But she is determined to go through with it to help raise vital funds for the hospice, which is already struggling to meet its running costs as a result of the credit crunch.

Then, on Friday, June 19, Mrs Andrews will be joined by mum Jacqui Purdham and friends Morag Robertson and Brenda Douglas on the six-mile Midnight Walk around Carlisle.

They haven’t set a fundraising target but say every donation they receive will go to help Harley and others like him.

Anyone who wants to sponsor them can contact Mrs Andrews at the craft shop.

First published at 05:24, Friday, 03 April 2009
Published by http://www.cumberlandnews.co.uk