At our 20 week scan, we found out Rory had a complex and rare congenital heart condition called Truncus Arteriosis. We were told he would need surgery as soon as he was born and our care was transferred from Frimley to the wonderful Evelina Children’s Hospital in London. Rory was born on the 8th April 2015 in St Thomas’ Hospital and had his first open heart surgery at 5 days old. Seeing Rory in intensive care after his first open heart surgery was a massive shock. His chest was still open and although we had seen pictures, no one can quite prepare you for the reality of seeing your tiny newborn hooked up to a multitude of machines with their bodies full of wires and tubes. After a 5 week stay in hospital, we headed home for a month before his next procedure.

In Rory’s first 18 months he had countless procedures (including another open heart surgery) and long stays at The Evelina - the longest stay being 5 months. There were some traumatic times in this period. During what we expected to be a routine Cath procedure at 9 weeks to widen his pulmonary arteries, the surgery had to be stopped as Rory had become unstable and was going into cardiac arrest. After an emergency surgical meeting, Rory was put on high-risk ECMO (a mini heart and lung bypass machine) and the procedure was done with this support. A few months later, Rory had an emergency 11 hour open heart surgery, where we were told his odds of making it through the procedure were around 50%. After the surgery, he was in a lot of pain and would spend hours screaming. He had to go to theatre again to have a pic line inserted, as he was so difficult to cannulate (by this time his head was fully shaved so he could have cannulas in his scalp). He has spent long stints in intensive care which has had an impact on his development and he was under feeding, sleep, OT and physio consultants for a long while. Rory did spend his first Christmas in hospital and amidst all the tough times, he did see his first pantomime and had a visit from Father Christmas!

Rory continues to have regular MRIs and CT scans and, at the end of last year, had stents inserted to widen his pulmonary arteries. Rory has a number of problems with his heart and the condition he has will need regular monitoring and on-going intervention but we are incredibly grateful and feel very lucky for the amazing care he continues to be given. Rory is a very brave and resilient little man and has made so much progress in the last couple of years. Starting school was a huge milestone for all of us and watching him go in with a smile on his face (mostly!) makes us incredibly proud.

To mark his 5th birthday (and my 40th 😉) I am running the London Marathon for the British Heart Foundation and The Evelina Children's Hospital. Being firmly in the eat crisps on the sofa camp, the marathon will be a huge challenge for me. However, it will be nothing in comparison to what so many children and their families have to go through every day. During our time in hospital, we saw children lose their battle with heart disease and this is why I am so passionate about raising funds to support the research and quality care that will help make a difference.

There are two links in the Team Members section below to donate:

* The Evelina Children's Hospital is the bottom link - Rory would not be here without them. It would be amazing if any additional sponsorship could go to them.

* TThe British Heart Foundation (I am so overwhelmed to have already achieved the target sponsorship for the BHF - THANK YOU SO MUCH!!!)

If you click on the links, there is more information about both charities. You can decide which charity you would prefer to donate to.

Huge thanks for all your support, kind messages and motivation!

Lots of love,

Yasmin, Ben, Noah and Rory xxx