On the last day of a very hot June 2017 Max Freddie Finnigan arrived, bang on time, at the John Radcliffe Hospital, Oxford. All 10 gorgeous pounds of him! Max was the final puzzle piece to our little family, and all was well. Mum and Dad (Cassie and Jon) and older sister (Jasmine) had waited a little while for him but the wait was totally worth it. He is gorgeous!

24 hours after Max was born it was discovered that he had been born with an anorectal Malformation – with a rectourethral fistula. To say we were shocked and devastated was an understatement. It was something we hadn’t ever heard of and our baby now needed emergency surgery to create a stoma. Not quite 3 months (and lots of tests) later, Max had his post sagittal anorectoplasty (PSARP) and then at 8 months he had his colostomy reversed.

We decided very early on that the anorectal malformation was not going to define Max. It would always be a part of him and would be a lifelong thing that he would live with, but we didn’t ever want Max to feel that it held him back or that it was something to be ashamed of. So, we went about living our lives. We swam, went to baby sensory, did music groups, and hung out with friends every week. We holidayed, went to soft play, had fun in the park, and even camped from when he was 8 weeks old! We did it all and Max thrived! He was a complete foodie, eating three meals a day from 7 months and pretty much ate anything we gave him! We lived, loved, had so much fun, and enjoyed our beautiful boy – so much!

Max had the most beautiful big blue eyes and huge smile that captured the hearts of everyone he met, even the sternest stranger in the supermarket! He loved a trip in the shopping trolley almost as much as a trip to soft play! His favourite colour was yellow which perfectly reflected his happy, laid back, and bubbly personality. He really was the most delightful and perfect little boy you could ever meet with such a loving and giving soul.

Sadly, Max died very suddenly and unexpectedly at the end of November 2018 of something unrelated to his anorectal malformation, leaving us devastated and bereft, to say the least. Our lives stopped there, and we miss him more than words can ever express. An outpouring of love and support followed, and we decided that it would be fitting for funds to be raised in Max’s name to hold the UK’s first anorectal malformation educational conference. The conference took place in April 2019 and it was a huge success! Everyone that we spoke to told us how inspiring the weekend had been. We very much believed that this conference would be the first of many and the first step of Max’s legacy living on.

Soon after the conference, we decided that the next step in Max’s legacy was the creation of a charity that could raise money, not only for future conferences, but to raise awareness of anorectal malformation ,and provide support to the UK anorectal malformation community -both adults and children. With the help of three other parents of children affect by anorectal malformation, we began the long process of setting up Max’s Trust, which was finally rubber stamped at the end of June 2019. We hope that Max will continue to inspire real change in the anorectal malformation community and be the ambassador the we always knew he would be.

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