Eden Valley Hospice and Jigsaw Autumn 2021 Newsletter

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.
10
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.
11