On the 9th November, my sisters and I will be doing a 10 mile hike around the Peak District to raise money for the charity ‘A Bear Named Buttony’, a charity that supports children with bowel conditions and go on to have a Colostomy bag.

Some of you may know that our oldest son, Casey, was born 6 weeks premature weighing 4lb 14oz (2.2kg). He was transferred straight to neonatal for breathing support and was too weak to feed, at 5 days the doctor noticed his colon forming on his stomach. At this point we were emergency transferred over to a bowel specialist hospital to see whether he needed immediate surgery, thankfully not in this instance. Over the course of the next 4 months he spent the majority of time in hospital with the odd weeks at home. When he had grown a little they were able to take biopsies and diagnose he had Hirschsprungs Disease. Hirschsprungs impacts 1 in 5000 babies, it is a condition where the nerves that move stools through the colon stop developing and leave the baby unable to open their bowels. In the short term this is managed through colonic wash outs and then pull through surgery to remove the ineffective colon.

Casey had his surgery at 4 months old and is now a healthy 8 year old, he does have some ongoing problems managing the condition which we continue to work through plans with his surgeon on.

Less than 20% of Hirschsprungs cases are genetic and in these cases are passed from parent to child. However fast forward to 2023 and my nephew was born with the same condition, as my sister recognised the symptoms from Casey the diagnosis was quick and he had surgery at 8 weeks. Earlier on this year my other nephew, Carter, was struggling with potty training after 3 years of chronic constipation, he was quickly referred due to his genetic link and within weeks was diagnosed with Hirschsprung’s disease too. Due to the damage caused to Carters bowel from having 3 years with no diagnosis, Carter would need a Colostomy bag. My sister started to research for support to talk to Carter about what was going to happen and why. This is where she came across the charity ‘A Bear Named Buttony’. They received a bear with a changable stoma and a story book about Buttony the bear who went through the treatment at hospital.

Straight away Carter was asking for the book every night and would sit changing the bears bag at bedtime, by the time the surgery came around he was completely aware of what a stoma (or button!) was for and why people have them. One night during the week of the surgery my sister explained that he was going to have a button just like his bear and he understood. So much so that when they were walking into the operating theatre together, he asked ‘Mummy am I going to get my button now?’

What this charity does is truly special.

It costs the charity £30 to make one bear so anything we can do to help other boys and girls who are getting their new stoma’s like Carter will make such a difference xx

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