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Eden Valley Hospice and Jigsaw Autumn 2021 Newsletter

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It gives us comfort

A mum has praised Jigsaw’s respite care for her son who has an extremely rare metabolic condition.

Jack Donohoe was born with nonketotic

hyperglycinaemia (NKH) which means his body can’t

get rid of excess glycine, an amino acid, leaving him

with disabilities, developmental issues, seizures and

visual impairment.

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Now 11, he has been going to Jigsaw since he was

four and mum Helen, from Cockermouth, said it had

had a major impact on their family life.

She said: “Jack was born with a metabolic disorder

so he has severe disabilities, he’s tube-fed and has

seizures. It’s very rare - there are around 25 children

living with it in the UK.

“When he was quite young obviously his disabilities

greatly affected his life but we could lift him and take

him wherever we went. But we’ve got two younger

children now who are nine and seven and as they got

to be toddlers it did get much harder going out and

about. We’d heard of Jigsaw but I didn’t really know

what a children’s hospice was like and we were a bit

nervous about it.

“I went on a visit and it immediately felt so calm

and welcoming, a really caring and nurturing

environment. So Jack started going for day care

for a couple of years and from age six we started

using the overnight care. Jack has got a very high

level of needs and he gets that high level of nursing

care there. When he goes to Jigsaw they are all very

aware of his individual needs and they are always

updating the things he likes.”

At Jigsaw Jack enjoys the sensory room and tactile

activities like baking and making pictures. There are

also special sibling days for him to share with his

brother and sister.

Helen added: “He’s really settled there and we

know he’s getting a very high level of care. It’s

very reassuring for us and gives us that little bit of

downtime. In the first few years of his life we didn’t

really know how long he would survive. When he was

very young I kept thinking I don’t want someone else

looking after him if he’s not going to be here for very

long. As he’s grown and we’ve realised he’s quite a

strong, resilient little guy he needed that sort of time

as well and we feel rejuvenated when we’ve had a bit

of a break and done some activities.”

The Donohoes also have the reassurance that Jack

will potentially be looked after into his early twenties.

“It gives us comfort knowing that when he’s there

he’s getting nursing support and a relaxed and

comfortable sensory time,” said Helen. “It is such a

great facility and support to have.”

If you would like to find out more about

the care, support and activities provided

at Jigsaw, Cumbria’s Children’s Hospice

please visit www.jigsawhospice.org

Hospice Heroes

We hope you’ll be inspired by some of our wonderful fundraisers showcasing the wide

variety of activities you can do to raise funds for your hospice.

Sarah and Diamond

Sarah raised money

and awareness for

the hospice by riding

Diamond more than 60

miles around Cumbria

dressed as Santa Claus.

Poppy Moore

Five-year-old Poppy

decided to get her waistlength

hair cut into a bob.

She wanted to donate

the hair to the Princess

Trust but at the same

time raise money for the

hospice. When her mum

explained to her what

the hospice did, Poppy

decided that’s where she

wanted the money to go.

Vicky Wren and Florian

Vicky and her partner

Florian have completed

the top 10 UK Ordnance

Survey walks in memory

of her dad, Mick, who died

while running up Skiddaw

in the Lake District.

Mick was a supporter

of Jigsaw.

Paula Colquhon (above)

Paula wanted to do the challenge of a lifetime - a sky

dive - while raising money for a good cause.

Precious Little Ones

Laura and Pam

Carruthers run Precious

Little Ones childminders

where they looked after

Lawson. Lawson’s family

were supported by

Jigsaw so Pam and Laura

wanted to give something

back. The children at the

childminders suggested a

superhero day as Lawson

loved them so they had a

superhero fun day on the

local green.

Jordan and Jonah

Two young men just out

of sixth form wanted

to do a big challenge

together before heading

off on new adventures

(uni and apprenticeship)

and raise money for a

local cause at the same

time. They completed

the Land’s End to

John o’Groats cycle on

their own.

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