Charlotte Dyer & Patrick Jones only had a few months with their beautiful baby boy Ruben, before he tragically died on Wednesday 12 January.

Charlotte said: “Ruben was a healthy, happy little boy, who suddenly became ill at three and a half weeks old.” Ruben was taken into Evelina Children’s Hospital and Charlotte was told that her son might not survive.

Unbeknown to the family, Ruben was born with GACI (Generalized arterial calcification of infancy), which caused him to suffer with dilated cardiomyopathy (DCM). DCM affects around 1 in 250 people in the UK. It’s rare in children, affecting only 1 in 100,000 infants, but it can be very serious.

Ruben recovered, but a month later he contracted bronchiolitis and was back in intensive care. He recovered again and returned home. Then, on New Year’s Eve, Charlotte and Patrick had to take him into A&E, where Ruben 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, Charlotte said.

In the morning of New Year’s Day, Ruben went into cardiac arrest twice more. He was given ECMO (Extra Corporeal Membrane Oxygenation), a special type of life support where a machine took over the working of Ruben’s heart so that it could rest and recover from the ordeal it had been through. After 12 more days of treatment, which were agonising for Charlotte and Patrick, it was clear Ruben couldn’t carry on fighting for his life.

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.

Now Charlotte and Patrick are raising funds for research into cardiomyopathy at Royal Brompton and Harefield hospitals. As a leading heart research centre, Royal Brompton and Harefield hospitals are the ideal place to research and develop new treatments for cardiomyopathy. The two hospitals also recently joined Guy's and St Thomas' NHS Foundation Trust, which Evelina is also a part of, so the researchers will be working with the hospital that treated Ruben.

The goal of this research is to make sure that in the future fewer parents go through the same heartbreak that Charlotte and Patrick have gone through. “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,” Charlotte said.

Charlotte and Patrick are hoping to raise £200,000 for a dedicated genetics research project. This research will help clinicians predict the course of the disease, open avenues for personalised treatment and have implications for family screening. Many cases of cardiomyopathy in children remain genetically unexplained and this research will help with the urgent need to better understand this condition and its causes.

“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."

Please give generously to Ruben’s Fund via the link below, to support research that will prevent other parents from experiencing the terrible loss that Charlotte and Patrick have gone through.

Donate to Ruben's Fund