Hello! We are Amy & Matt, and THIS is our little bean, Rory.
In May 2019 we gave birth to our first child, a gorgeous little boy who we named Rory. Four and a half months later, following various investigations at Bristol Eye Hospital for what we thought was a lazy eye, Rory was referred for an urgent MRI scan and quickly diagnosed with a tumour on his brain stem. Under the care of the neurosciences team at Bristol Royal Hospital for Children he underwent major brain stem surgery to biopsy the tumour and attempt to remove as much of it as possible. The surgeons performed a successful biopsy and a partial resection, but felt that they couldn’t safely remove the entirety of the tumour without leaving Rory with catastrophic side effects.
We were devastated to learn that the biopsy result showed that the tumour was medulloblastoma, an aggressive type of high grade cancer very rarely seen in babies. Rory was too young to undergo any radiotherapy treatment for the cancer, and so he began an intensive and gruelling chemotherapy regime two weeks after surgery. Rory remained the coolest cucumber ever throughout all of his treatment, keeping all three of us smiling in the face of extreme adversity.
Our hearts are so very broken to share that Rory's second round of chemotherapy went horribly wrong and he was admitted to PICU on Christmas Day 2019. As a result of the intensity of his chemotherapy treatment, Rory had contracted veno-occlusive disease (VOD) which subsequently led to multiple organ failure. Our little warrior spent a brave two and a half weeks fighting for his life, but passed peacefully away on Saturday 11th January. We are raising funds in his name to research medulloblastoma, give back to the wards and charities that helped us, but also in the hope of progressing the search for kinder treatment regimes which are less likely to result in devastating side effects such as VOD.
It goes without saying that Rory will forever be our hero and our daily inspiration to live life full of purpose and love. We will do so much good in his brave, beautiful spirit.
Please join us on here to follow everything we do in Rory's name and to help us give back to the amazing people and organisations who've supported him. Thank you for visiting!
Also a giant thank you to Simone at BowlerBearDesigns who designed Rory's dinosaur logo. Do take a look at her gorgeous work here.
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