Charlotte Dyer and Patrick Jones' son Ruben arrived in September 2021, following a healthy pregnancy and normal birth.
When he was three and a half weeks old the couple realised something was wrong.
Charlotte explains: “His feeding and sleep patterns changed, his skin became mottled and clammy, and he was having difficulty breathing.” Tests at East Surrey Hospital (ESH) revealed that Ruben’s heart was enlarged, and he was transferred to Evelina London Children's Hospital. Diagnosed with dilated cardiomyopathy – a disease of the heart muscle rare in babies – he remained there for 10 days, before being discharged with a treatment plan and medication. Further visits to ESH and Evelina followed in November, when Ruben contracted bronchiolitis and needed oxygen to help him breathe.
Not long after coming home again, both Patrick and Ruben’s older brother Sebastian, 4, tested positive for Covid-19: Charlotte and Ruben left the family home in Hurst Green to avoid it. Once clear of the virus, the family were reunited and able to spend Christmas together, but a week later both Charlotte and Ruben also tested positive. On New Year’s Eve, Ruben’s health deteriorated and he was rushed back to ESH, where he suffered a cardiac arrest. The family prepared for the worst, but doctors were able to bring him back. Ruben was taken to Evelina once more, suffering two further cardiac arrests but fighting back to life each time. He was placed on an ECMO machine, which replaces heart function, but after 12 days of treatment, Charlotte and Patrick knew he had had enough: it was time to say goodbye. Ruben died peacefully on 12 January 2022.
The couple underwent tests to try to understand what had happened to their son. Several months later they had an answer: Charlotte and Patrick were both found to have a defective gene, giving their children a one in four chance of developing the condition GACI (generalized arterial calcification of infancy). This disorder was found to be the cause of Ruben’s dilated cardiomyopathy. His already struggling heart was then attacked by Covid. The family is now waiting on tests that will hopefully show Sebastian is clear of the condition.
Charlotte says telling Sebastian that his brother wasn’t coming home was incredibly difficult: “How do you explain something like this to a four-year-old? We just had to be honest with him and tell him Ruben wasn’t well and, although the doctors tried really hard to save him, they couldn’t because he had a broken heart. Sebastian keeps asking now if he has a broken heart, and if we’re going to die, too.” The youngster still includes Ruben in stories and in the games he plays. He looks out of the window every evening, searching for ‘Ruben’s star’ in the night sky.
The chance to make a difference
When friends and family started asking how they could help, the couple decided that Ruben’s life would be the inspiration behind a big fundraising campaign:
“There are still so many unknown factors about cardiomyopathy in infants, so we wanted to fund research that will stop other families going through this situation. We spoke to a doctor working for the Royal Brompton Hospital (RBH), who specialise in this condition. He suggested we raise money to fund a specific research project through the Royal Brompton & Harefield Hospital Charity. And this has a connection to Evelina, too, as both are part of the same trust.”
In Ruben’s name
Ruben’s Fund was established with the aim of raising £200k to set up a focused project that will ‘research genetic diagnosis, which can help predict disease course, open avenues for personal treatment, and have implications for family screening’.
The fund has so far raised over £35k: as well as donations, there have been half-marathons and sponsored silences completed in Ruben’s name. Local organisations have been supportive, and the Original Factory Shop in Oxted has recently adopted Ruben’s Fund as their chosen charity. Charlotte has also organised a money-raising raffle, which opened on 1 June, and to which many local businesses have donated prizes. Tickets cost £2 and can be bought from the Co-op on Station Road, Oxted, as well as at any shop displaying a poster in its window. Charlotte is grateful to everybody who has given money so far:
“We’re aiming high: I want Ruben’s life to have an impact.”