Boy fundraising for 'stoma bears' to help others

Riley smiling while cuddling his Buttony bear. He is wearing a red T shirt and has short brown hair.
Riley was gifted the bear, which also has a stoma, by charity A Bear Named Buttony [Family photo]

A young boy who was able to accept having a stoma after being given a cuddly toy is raising money to help other children in the same situation.

Riley, aged six, from Melksham, had the stoma - a bag which removes waste from his body - fitted after developing complications following his birth.

He plans to walk 10km (6.2 miles) to raise money for charity A Bear Named Buttony.

Initially hoping to pay for five bears, Riley's fundraising has so far hit more than £1,600 – enough to buy more than 50.

Riley holding Buttony bear. He is also holding up his red jumper, showing his stoma bag.
Beth said Buttony Bear was now a "massive part of the family" [Family photo]

His mother Beth said he found it difficult to be different to other kids until he was given his own "Buttony bear" - which also has a stoma.

"I am very excited to do my walk as I know its helping lots of children like me who don't have a bear yet," said Riley.

"I want to raise lots of money to help lots of children as Buttony bear is the best," he added.

"He has no concept of money, so to him it’s [The £1,600} like a million pounds," said Beth.

Riley in sleeping in a hospital bed. He is hooked up to a machine with cannulas fitted.
Riley has had 11 surgeries and had a stoma fitted in August 2020 [family photo]

Beth said they first realised something was wrong with Riley at eight weeks old when he was admitted to hospital with a urinary tract infection and later bacterial meningitis.

"He spent the next few weeks hooked up to antibiotics and fluids. His tiny veins kept collapsing from the cannulas," she said.

"Nothing is harder as a parent than seeing your child so poorly and being unable to help them," she added.

Beth said Riley later recovered, but at six months old, tests discovered his left kidney was scarred, his right had reflux and there were also issues with his bladder.

Referred to Bristol Children's Hospital, he was diagnosed with Posterior Urethral Valves (PUV), a condition found only in boys that affects the urethra (the tube which runs from the bladder to the outside).

Riley has undergone 11 surgeries, including a vesicostomy - adding a type of stoma allowing urine to drain from his bladder into a bag - in August 2020 when he was two years old and had experienced multiple infections including sepsis.

The back of Riley's red t-shirt which reads 'A Bear Named Buttony - Riley'. He is holding Buttony to his chest.
Riley will take part in a 10km walk on Monday [family photo]

Beth and Riley's father Andy said the surgery had "been life-changing" but said he had struggled at times to understand why unlike his friends, he has a stoma.

Trying to find a way of helping him deal with the process, Riley was later gifted the toy, alongside a storybook explaining why the bear has a stoma, by charity A Bear Named Buttony.

"He's been asking a lot of questions - why he's got a stoma and he's been saying 'it's not fair' but having the bear has really helped him," said Beth.

"He's basically his best friend. He goes to school with him and he's on the register. He's a massive part of the family.

"It's really helped him accept himself, because he doesn't feel alone," she added.

Beth holding Riley as a baby in hospital. She is wearing a blue jacket and he is snuggled asleep against her.
Beth said Riley's stoma had been "life-changing" for him [family handout]

Beth and Andy said the idea for the walk, which will take place on Monday, came from Riley's grandmother to help with his mental health and help other children like him.

Initially hoping to raise £150 to help five children, Beth said Riley can't believe he's surpassed his goal.

"He's so proud of himself and we just can't believe people's generosity," she added.

Eilidh and her mum Jenny. Eilidh has blonde shoulder length hair and she is wearing patterned pink, green, yellow and purple dungarees. She is stood in a garden with a summer house in the background. Jenny is smiling beside her wearing blue, yellow and red floral patterned dungarees. She is wearing glasses and has brown hair.
Jenny Gow MBE, whose daughter Eilidh had her first stoma fitted aged three, set up the charity in 2015 [Jenny Gow]

The generosity of Riley's supporters will be felt far away in Aberdeenshire by the charity's founder Jenny Gow MBE, who set up the Buttony Bear charity in 2015 years after her daughter Eilidh had a permanent ileostomy.

Since its inception in 2015, the charity, who work with paediatric centres across the UK, has donated over 6,600 bears to children.

"The bear makes opening conversations about stomas a lot easier because the child can explain what's happened to them using their bear," said Ms Gow.

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