A children’s hospice isn’t just a place for end-of-life care – it’s a safe environment where youngsters can develop, thrive and enjoy time with loved ones.
That’s the message from mum Sarah Greene, whose three-year-old son Gibson is one of only 100 people in the world with a diagnosis of trichothiodystrophy.
The genetic condition, known as TTD, ages children internally, and Gibson faces hurdles caused by a range of complications.
He is supported by staff at Jigsaw, Cumbria’s Children’s Hospice in Carlisle, which Sarah says has become one of Gibson’s favourite places.
She is telling his story as part of the centre’s legacy campaign, which encourages people to consider leaving a gift in their Will to fund ongoing care.
Sarah said: “Jigsaw to us is a magical place where Gibson’s disability is hung up at the door alongside his coat.
“The second you walk in the door you are greeted with a huge smile, a cuddle for Gibson and the offer of a brew. The facility itself is colourful and modern and you can hear laughter floating down the corridor.”
Gibson was born weighing just 2lb 3oz and he has struggled to gain weight all his life.
Doctors found he had double congenital cataracts, for which he has already had three eye operations to remove the lenses, and he is visually impaired. He has problems with his tooth enamel not forming properly, and issues with his hair, which is sparse and breaks, leaving bald patches.
Gibson has global development delay which means so far he has only learned to speak a few words.
And he has XP skin disorder, a genetic condition that results in a high sensitivity to UVB rays so the skin burns more easily, increasing the risk of skin cancer.
But despite his challenges, Sarah, from Gretna in Dumfries and Galloway, says the love shown by Jigsaw’s staff has helped him overcome his shyness and he now says a cheery hello to people he meets.
How Jigsaw entered Gibson’s life
Sarah said: “Gibson will hit a point where his development stops, and degeneration begins.
“We currently have 16 specialists in Scotland, from Glasgow to Annan, that help care for him and a further 10 specialists at the rare disease centre at Guy’s and St Thomas’ Hospital in London.
“When Jigsaw was first suggested to us as a family, my instant reaction was no, not a chance.
“My only experience with a hospice was somewhere people went to die. I could only imagine a building that felt sad the second you walked through the doors and the nurses to be cold and unwelcoming.”
However, a referral was made by the specialist team in London who’d been supporting Gibson and his family, and Sarah reluctantly agreed to give it a go, expecting to attend once and then make her excuses.
“I’m happy to say I have never been more wrong about anything my whole life,” she said. “Jigsaw is one of our favourite places to go and the staff feel like family.
“The toys are all adapted so Gibson can play like any other child, the sensory room is soft and safe so he can explore and push the boundaries, because if he does fall he simply bounces.
“The staff don’t question why he can’t walk or talk. Instead, they love and accept him as he is, and they will crawl along with him if that’s what makes him happy.”
Sarah said the artwork Gibson creates at Jigsaw will be treasured forever, especially cards made for Christmas, Easter and Mother’s Day.
“Amazing as all those things are, though, the most special thing about Jigsaw is the people that work there,” she added. “No one is ever too busy to spend time with Gibson, whether it’s a cuddle, dancing along to the song Baby Shark or letting him fall asleep.
“When we started going I had a little boy who was shy and wouldn’t go more than an arm’s length from me. Now he’s a boy who will say hello to everyone and crawls off to the sensory room the second his knees touch the floor.
“Jigsaw has become a huge part of our lives that we will be forever grateful for.”
Extra support for Sarah
The support Jigsaw offers hasn’t just been for Gibson, but also for Sarah in helping her to navigate the future and her son’s condition.
“Although Gibson was the one that the referral was made for, I have also been given help with counselling,” Sarah said.
“Having someone to talk to about anticipatory grief has been so helpful and made a real difference to my own attitude and outlook.”
Jigsaw, Cumbria’s Children’s Hospice, is the only children’s hospice in the county. It relies on donations from the public to fund its care and around one third of its finances come from gifts in wills.
Jigsaw, part of the Eden Valley Hospice in Durdar Road, Carlisle, is among 143 hospices across Scotland, England and Wales taking part in the Hospice UK National Legacy campaign.
For details of how to support Jigsaw, Cumbria’s Children’s Hospice, through your will, please visit: https://www.edenvalleyhospice.org/giftinwill/
]]>
One of the original members of Eurovision pop group Bucks Fizz has visited a Lake District town and declared it lovely. ]]>
Kendal is saying farewell to Poppy Atkinson.]]>
The Big Golf Company hosted the Cumbria County Men’s Golf Team for their annual training camp in Spain. ]]>
Police have issued a CCTV image after a barrier was damaged at a McDonald's branch in Carlisle. ]]>
People are invited to submit their designs for a new Cumbrian community flag. ]]>
Tributes have been paid to a South Cumbrian motorcyclist who has died following a collision earlier this month. ]]>
An appeal has been issued by police this week for information about damage caused to planters in a West Cumbrian town earlier this month. ]]>
A Lake District guest house has been sold for an undisclosed sum. ]]>
Today's mobile speed camera van locations in Cumbria.
]]>