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Page last updated at 11:47 GMT, Thursday, 15 July 2010 12:47 UK
EACH client Bethany Woods's muscular dystrophy care
By Andrew Woodger
BBC Suffolk

Bethany and Ryan Woods
Bethany Woods and her brother Ryan attend sibling days at EACH

The family of a girl with muscular dystrophy is looking forward to EACH's new hospice in Ipswich.

Eight year old Bethany Woods has a rare form of the condition which is life-threatening and she gets care at EACH's existing bungalow in Ipswich.

"The current hospice is fantastic but a new one would make a world of difference to so many children," said Treena, Bethany's mother.

The Treehouse Appeal is aiming to raise £3m for the new hospice.

When Bethany was born her mum noticed she was unwell and she underwent many tests.

At the age of just 22 weeks, she was diagnosed with merosin negative congenital muscular dystrophy, which is a condition which causes poor muscle tone, tightness in the joints and respiratory problems.

Bethany uses a wheelchair and has been tutored at home for the past three years, because going to school and being surrounded by other children made her constantly ill.

"It's scary when you discover your child has a life-threatening condition," said Treena.

EACH Treehouse Appeal

"You don't know what to do, who to turn to or how to cope.

"It was a roller coaster of emotions and you couldn't plan too far ahead as you didn't know what was going to happen.

"We almost lost her a couple of times and it was heart-breaking."

Hospice care

When Bethany's family discovered they were eligible for children's hospice care the news was received with mixed emotions.

"We just didn't know what to expect and we felt a bit scared," said Treena. "But when we visited the hospice we realised it was a warm and friendly place not only where Bethany could have fun but also where she would be safe.

"They support not only Bethany but the whole family - helping us when we are at our most vulnerable.

"I don't think I would be here today if it wasn't for them."

Bethany's brother Ryan, who's 13, goes to the sibling days organised by EACH.

The hospice says sibling days are where children who have an ill brother or sister can enjoy themselves, meet other young people in the same position, allow them to realise they are not alone and, most importantly, have some fun.

"Ryan is fantastic and really good at looking after his sister. Both Ryan and Bethany look out for each other and they both get upset when the other is ill," said Treena.

"He just gets on with it and never complains - he really is amazing, they both are.

EACH Treehouse song recording
Ray Trevasso (left) at the recording of the Treehouse song at BBC Suffolk

"Ryan is very caring and has his sights set on becoming a doctor. He always helps the nurses when he visits his sister in hospital and I am sure these experiences have made him want to help others.

"Bethany loves the music therapy sessions with Ray Trevasso, the music therapist, and she has been to the annual music in the garden event at the current hospice.

"The new dedicated music room at the new hospice, which will be sound-proofed, will mean the children and their families will be able to make as much noise as they like!"

The Treehouse Appeal

The current EACH hospice is small, which limits the amount of care which can be provided.

The new hospice will allow more families to access care and support and mean new activities and treatments can be delivered.

The Treehouse Appeal began on Tuesday, 16 March, 2010 and BBC Suffolk is asking you to help us reach the first £1m mark.

Our totaliser will be updated every Friday morning.

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EACH Treehouse Appeal supported by BBC Suffolk EACH Treehouse Appeal
BBC Suffolk is helping East Anglia's Children's Hospices raise the 3million needed to fund a purpose built hospice in Ipswich.
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