Our beautiful boy Max was born in June 2017, weighing 10 pounds and apparently healthy. A day later our joy turned to fear as he became listless and uninterested in feeding. It transpired that he had been born with a little-known condition known as Imperforate Anus (IA), a type of Anorectal Malformation (ARM). The incidence of this is one in 5000 births. There was no opening in Max's anus for waste to escape his system and his tummy quickly became distended. His bowel had formed a fistula with his urethra. He was rushed to surgery where he underwent an operation to form a colostomy and a mucus fistula.

Max underwent his second operation just less than three months later, which involved cutting him open from behind his testicles to his coccyx and detaching the bowel from the urethra and connecting it to a newly formed anus. This was a delicate and long operation but was a success.

A further five months later Max underwent his third operation, which involved the closure of his stoma and a nervous wait whilst he recovered. We eagerly anticipated his first poo and fortunately we only had to wait a couple of days for his first pooey nappy! In the months that followed Max went from as many as twenty nappy changes a day down to about five as his bowel settled slowly.

Despite three major operations in the first eight months of his life, including one on the first day, he fought and recovered so quickly. He was the happiest, funniest and most loving baby boy who thrived. As for us, whilst we made sure Max lived a life full of fun and new experiences, we were struck by how little support there was in the IA/ARM community, including the lack of charities to raise awareness. We learned of the ONE in 5000 Foundation, set up by an inspirational man called Greg Ryan from Australia who was born with IA and spent much of his life struggling with his "Hidden Secret" until he started sharing his experiences and helping others born with IA. He wrote a book, A Secret Life - Surviving a rare congenital condition, which we read. We vowed that Max would grow up knowing about and being proud of his condition and, hopefully, become an ambassador for ONE in 5000 and IA/ARM.

Sadly, Max suddenly passed away in November 2018 from an unrelated illness aged 17 months. We are heartbroken, empty and forever changed, but in time we are determined to ensure that Max's legacy endures and his light lives on. He really was an IA/ARM Warrior who made us proud and full of love everyday. He has already inspired the creation of a ONE in 5000 UK support group for families living with IA/ARM and the Foundation have further announced that, in Max's memory, they want to bring a conference to the UK that will bring families affected by IA together with specialists in the field from around the world.

So, if you've been inspired by our story and would like to help us make the UK conference happen, please consider donating. All money raised will go directly to the ONE in 5000 Foundation and towards raising awareness, information, medical, and support for families and professionals. Please help us keep our amazing Max's memory alive and continue his legacy.

For further information, please visit the ONE in 5000 website:

http://www.onein5000foundation.org/aims

UPDATE: The conference is happening! Thank you to all who donated and helped us get the conference organised! Please keep donating, as we intend to set up the ONE In 5000 UK charity, affiliated with the ONE In 5000 Foundation, where all remaining funds will be transferred to to facilitate future conferences and events for the IA/ARM community.

Furthermore, Greg Ryan has updated his book, A Secret Life, with new chapters, including one about Max. We are truly honoured by this gesture and we will be holding the book launch in the UK, see flyer below: