Jenny Gow’s daughter Eilidh was just three years old when she underwent life-changing surgery to have a stoma fitted.
It was a frightening and confusing time; not just for the toddler, but for the entire family.
“We were told the stoma would make her well, and we jumped at that chance,” Jenny recalls. “But the first stoma I ever saw was Eilidh’s.”
That moment — difficult as it was — planted a seed. And ten years ago, it bloomed into something extraordinary: A Bear Named Buttony.
The Ballater-based charity, which Jenny launched with the help of local volunteers, now supports children and families across the UK who are living with stomas.
Each child receives a cuddly bear, fitted with a replica pouch just like theirs, designed to make the experience less isolating.
The idea for the bear came from a friend who sewed a button onto a soft toy as a stand-in for Eilidh’s stoma. That original gift became Buttony.
“It just helped Eilidh feel seen,” Jenny says. “And that’s what the bears still do. They help kids see themselves. They say: this is normal, this is okay.”
Growing up in the shadow of an older sister’s health condition
Now, a decade on, the charity is celebrating its tenth anniversary — and doing so with a very personal touch.
A children’s book, Nothing Can Stop Bear Now, is being launched this week, written by Jenny’s youngest daughter Louise, a creative writing student at Stirling University.
Louise grew up in the shadow of her older sister’s condition. While Eilidh was in and out of hospital, Louise found it difficult to talk about the stoma.
“When Eilidh was younger, she wasn’t comfortable with anyone knowing about the stoma,” Jenny says. “There was so much stigma towards bowel disease generally.
“So Lou, as a younger sibling, found that difficult to not be able to talk about what was happening.”
The new book tackles this head-on, showing how powerful it can be to talk about things openly.
“[Louise] would never say she had anything other than a good childhood,” Jenny says, “but it clearly wasn’t easy.
“When there is a chronically ill child in the family, there was a lot of attention on one child and the other child having to make do.”
‘Prettier than a bumhole’
Eilidh, now 27, still lives with a permanent stoma, which was the result of a congenital issue with bowel development.
But she’s also living a full life, studying film directing at Glasgow’s Royal Conservatoire of Scotland and doing so, in her mum’s words, “with no fear”.
“She bungee jumps. She goes for everything. Maybe that’s come from what she’s already had to face,” Jenny says.
Though the early years were tough, Eilidh is a proud supporter of the charity she inspired.
“She loves what it’s become, that it helps other kids realise they’re not alone.”
And as for the stoma itself?
“She used to say it was prettier than a bumhole,” Jenny laughs. “And at the end of the day, poo is poo — doesn’t matter where it comes from.”
Bringing Buttony Bear to the whole country
Over the past decade, more than 11,000 Buttony Bears have been sent out to children across the country. But it’s not just the children who benefit.
“We had a message recently from a granny,” Jenny says. “She told us her grandson’s bear helped the whole family adjust — his sister, his cousins, his aunts and uncles. That was really powerful to hear.”
Another parent wrote to say their child, once too embarrassed to go to school, had changed their attitude after being given a colourful pouch cover: “He’s been showing everyone who wants to see it. Thank you for changing his outlook.”
One message said simply: “Buttony Bear is magical.”
It’s feedback like that which keeps the entirely volunteer-run charity going. Based in Ballater, the team includes around 45 people, five of whom have been with Jenny since day one.
“It’s a labour of love,” she says. “Some of us have no personal connection to stomas — they just see the difference it makes and want to be part of it.”
Changing the script on stomas
Much of the stigma around stomas, Jenny believes, comes from lack of exposure and conversation. It is something she’s determined to change.
This year, the team will launch an educational pack for schools across Aberdeen and Aberdeenshire, designed to explain how the gastrointestinal system works and why some people need stomas.
“We want kids to grow up understanding it,” Jenny says. “If you explain things early, they’re not scary anymore.”
She’s also seen progress in wider society, not least from celebrities who’ve spoken publicly about their own stomas, including comedian Louie Green.
“Louie’s an adult with a stoma,” says Jenny, “but he was gifted a bear to help his children adapt and they found that really helpful.”
A royal nod from Queen Camilla
As part of the 10th anniversary celebrations, Jenny and her team launched Louise’s new book at the Darroch Learg Hotel in Ballater last month. As part of the celebrations, anyone can pay £5 to sponsor a book for a Buttony child.
Among the special touches was a letter of support from Queen Camilla, a local Deeside resident who has long championed community causes.
“It’s really special,” Jenny says. “It means a lot to have that kind of support — but honestly, what matters most is the children.”
And though Jenny is already looking to the next 10 years, she’s able to look back with pride on what the Ballater charity has achieved.
“We never imagined it would grow like this,” Jenny says. “We just knew we had to do something.”
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