We are raising money in memory of our beautiful little boy, Ruben, who sadly died on the 12 January 2022 at just three and a half months old, due to Dilated Cardiomyopathy.

Cardiomyopathy is a disease of the heart that affects around 1 in 250 people in the UK and is the leading cause for cardiac transplantation. Cardiomyopathy in children is much rarer, affecting about 1 in 100,000 infants, with dilated cardiomyopathy accounting for over half of those cases. It is a serious condition, with a high burden on the child and family, and sadly a high mortality rate. Which is unfortunately, where we found our family…

Here’s our story: Ruben was a healthy, happy little boy, who suddenly became ill at three and a half weeks old. This was when Evelina Children’s hospital, gave us the news that he may not make it, or be in hospital for months receiving treatment. Luckily Ruben bounced back and was out of hospital within ten days, defying all odds, and enjoying time at home with his big brother and us. However, a month later we faced another setback, which took us back to Evelina’s PICU, as he had caught Bronchiolitis. Again, our strong little boy was discharged after ten days and we got to experience his lovely nature and big smiles. Our last admission was on New Years Eve, where Ruben suddenly declined within the day, and we rushed him to A&E where he was treated, but went into Cardiac Arrest for 20 minutes. We were told to say goodbye to him, but when we came into the room, he managed to clutch onto life enough, so that we all had some hope again and the chance to get to Evelina’s PICU. He was settled into PICU just after midnight and was very fragile, twice that morning he went into Cardiac Arrest with the last time for 30 minutes – the doctors only had one option, which was to put him onto ECMO (a machine that takes over being his heart). This bought some time for his heart to recover from the trauma it had gone through. We waited, hoped and sat with him for 12 long days, with each day having negatives and positives throughout, it was the hardest time of all our lives. However, Ruben couldn’t fight anymore, he had done all that he could, and that was more than anyone could have expected, and it was time to say bye. Holding him close and letting him slip away.

This is why we feel so strongly about supporting the Royal Brompton & Harefield Hospital Charity with Ruben’s Fund. Our aim is to fundraise £200,000, which will allow the specialist research team at Royal Brompton (which recently merged to join forces with the Evelina Hospital and Guy’s and St Thomas’ Hospitals) to set up a focused and dedicated project to research genetic diagnosis, which can help predict disease course, open avenues for personalised treatment, and have implications for family screening. As most paediatric cardiomyopathy remains genetically unexplained, there is an urgent need to better understand genetic susceptibility and underlying disease mechanisms. If we can help just one baby or child suffering the effects of Cardiomyopathy, by supporting the science to look into this, then this will be our privilege and honour - all in the name of our beautiful baby boy, who impacted so many people in his short life. We know it is a very large number, however, we will take one step at a time to try and get there and if it takes our lifetime, it will be the lifetime that should have been with Ruben.

Thank you for taking the time to read our story and if you wish to donate, please see the big blue ‘donate’ button above Ruben’s photo, your generosity is much appreciated.

Charlotte Dyer & Patrick Jones - Parents of Ruben Dyer-Jones