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'They thought of everything' - delight as £10m children's hospice opens its doors

PUBLISHED: 17:37 21 September 2019 | UPDATED: 10:56 22 September 2019

Lola Morris, 23-months-old, with her dad, Ronnie, in the music room at The Nook hospice, during the open day for families who will use its facilities at Framingham Earl to have a first look. Picture: DENISE BRADLEY

Lola Morris, 23-months-old, with her dad, Ronnie, in the music room at The Nook hospice, during the open day for families who will use its facilities at Framingham Earl to have a first look. Picture: DENISE BRADLEY

Copyright: Archant 2019

It boasts a hydrotherapy pool, state of the art sensory room and music studio.

The sensory room at The Nook hospice, during the open day for families who will use its facilities at Framingham Earl to have a first look. Picture: DENISE BRADLEYThe sensory room at The Nook hospice, during the open day for families who will use its facilities at Framingham Earl to have a first look. Picture: DENISE BRADLEY

And after five years of fundraising hundreds of parents and children have had their first glimpse of a "special" new children's hospice for the region.

East Anglia's Children's Hospices (EACH) have been planning the new building - The Nook - for six years after they outgrew their home at the Carmelite Monastery at Quidenham.

But they had to raise £10m and build for two years to realise their dream, and opened their doors for the first time on Saturday.

The fundraising campaign was backed by the EDP and Norwich Evening News.

The spacious outside area at The Nook hospice, during the open day for families who will use its facilities at Framingham Earl to have a first look. Picture: DENISE BRADLEYThe spacious outside area at The Nook hospice, during the open day for families who will use its facilities at Framingham Earl to have a first look. Picture: DENISE BRADLEY

There is still £800,000 left to find to ensure the building is fully fitted out, but EACH hopes to begin care at the site in Framingham Earl next month.

More than 200 families were invited to the new hospice at the weekend to see the work that had been done.

One was two-year-old Aria Beales from Sutton, who was born with congenital toxoplasmosis.

A normally harmless parasite most of us will catch, it can be fatal for the baby if caught during pregnancy. Aria also has epilepsy and cerebral palsy.

The Newman family from Lowestoft enjoying the spacious outside area at The Nook hospice, during the open day for families who will use its facilities at Framingham Earl to have a first look. Mum Jo, with Gracie, 13, dad Wayne, and Daisy 10. Picture: DENISE BRADLEYThe Newman family from Lowestoft enjoying the spacious outside area at The Nook hospice, during the open day for families who will use its facilities at Framingham Earl to have a first look. Mum Jo, with Gracie, 13, dad Wayne, and Daisy 10. Picture: DENISE BRADLEY

"Statistically speaking, she should not be here," said mum Jenny Madden, 30. "She is a real fighter."

She said EACH had "thought of everything" with the new facility.

"The hydrotherapy will be amazing for her muscle tone and access to the sensory room will be absolutely amazing," she said.

"The detail they have gone to in designing it is incredible."

The Beales family from Sutton, taking a look around The Nook hospice at the open day for families who will use its facilities at Framingham Earl. Two-year-old Aria Beales, with dad, Martin, brother Joel, nine, and mum Jenny Madden. Picture: DENISE BRADLEYThe Beales family from Sutton, taking a look around The Nook hospice at the open day for families who will use its facilities at Framingham Earl. Two-year-old Aria Beales, with dad, Martin, brother Joel, nine, and mum Jenny Madden. Picture: DENISE BRADLEY

The Nook is spread across a single floor, with more areas for clinical care, larger and better equipped en-suite bedrooms, dedicated therapy rooms and much more.

Set on a five-acre woodland site, closer to the centre of the county, hospitals and road networks, it also means the majority of families and staff will travel shorter distances to receive and deliver care.

Fourteen-year-old Rebekah Hughes has Dravet syndrome - a form of epilepsy with "severe seizures". Every time one strikes she has to be rushed to hospital.

"She has been having home care from EACH for many years now," said her mum, Annabel. "It has been really difficult to access care at Quidenham because it is too far from the hospital.

Ava Weeks, four, in the soft play room at The Nook hospice, during the open day for families who will use its facilities at Framingham Earl to have a first look. Picture: DENISE BRADLEYAva Weeks, four, in the soft play room at The Nook hospice, during the open day for families who will use its facilities at Framingham Earl to have a first look. Picture: DENISE BRADLEY

"Here it is much more accessible for the hospital and safer for the ambulance to get here."

Rebekah also has autism and scoliosis, and her mum is looking forward to the freedom she will find at the new facility.

"It is very difficult for her to go to a social group without me there," she said. "She is a teenager now and she doesn't want her mum hanging around.

"When she comes here we know she is going to be safe. It makes the time we spend with her really special."

Rebekah Hughes, 14, her twin Henry, and mum Annabel, have a first look at The Nook hospice during the open day for families who will use its facilities at Framingham Earl. Picture: DENISE BRADLEYRebekah Hughes, 14, her twin Henry, and mum Annabel, have a first look at The Nook hospice during the open day for families who will use its facilities at Framingham Earl. Picture: DENISE BRADLEY

Ten-year-old Toby Fletcher, from Foulden, has dystonic cerebral palsy.

His mum Sarah, 40, has to set regular alarms through the night to give him his medication, and said if it weren't for EACH, she "wouldn't sleep".

"He gets a lot of pain and we have to try and keep on top of that," she said.

"This is just so I can have a full night's sleep and be able to do things with my other children."

Jane Campbell, service manager at The Nook hospice, at the open day for families who will use its facilities at Framingham Earl. Picture: DENISE BRADLEYJane Campbell, service manager at The Nook hospice, at the open day for families who will use its facilities at Framingham Earl. Picture: DENISE BRADLEY

She said the new facility was "massive compared to Quidenham".

"It is so special. Quidenham was brilliant but it just needed somewhere bigger. The children had outgrown it."

The building has an anechoic ceiling, bored with holes to prevent echoes for children with sensory impairment, and planners had to consider every finer detail.

"It is not just about having a hydrotherapy pool, it is about having a hub for palliative care as well," said service manager Jane Campbell.

"We don't only deliver care here but in the community, and we can get people through the door here who might be nervous about palliative care.

"We have had families having home care historically and when they can have day care instead they can bring their child to us and have some time off.

"There can be this fear parents experience of coming to a hospice but actually it can be a really happy place.

"Nobody wants to be in our club but if we can make it is good as it can be for them we are doing our job.

"We are keeping the passion the staff had at Quidenham but now we have this fantastic building where it is going to be easier to deliver care."

For more information about The Nook and how you can support it visit www.each.org.uk/thenook.

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