Fundraiser for family of six-year-old Sussex boy who is still in intensive care following heart surgery

Six-year-old Dylan Booth from Crowborough is currently at Evelina London Children’s Hospital in London, having undergone 12 major operations in the past few weeks.

His father Daniel, 40, said Dylan has Williams Syndrome and went into hospital on May 31 for an operation to widen the stenosis on his aorta.

He said: “After that operation it’s just been complication after complication. His heart is very unwell. He’s got an extremely thick walled muscled heart, which struggles to pump blood.”

According to www.williams-syndrome.org, Williams Syndrome is a genetic condition that is present at birth. Its medical problems can include cardiovascular disease, developmental delays, and learning challenges.

Daniel said Dylan has stenosis throughout his body and said opening up the aorta affected his heart so Dylan could not pump the blood through the coronary artery.

He said: “There wasn’t enough pressure there, so he’s had to have stenting and ballooning of his pulmonary artery. He had to be put on an ECMO (Extra Corporeal Membrane Oxygenation) bypass machine because he had a cardiac arrest.”

Afterwards, Dylan had a small bleed on his brain, further cardiac arrests and a blood clot behind his heart that had to be removed.

Daniel said: “They then did a CT scan and found out his coronary arteries were extremely small. So he had to have heart surgery again to replace his coronary artery with a vein from his leg. Since then, because of being on the ECMO and his lungs being deflated and basically his whole body not functioning, he’s now contracted sepsis and is battling that.”

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He said Dylan, who is fully sedated, has not been able to breathe on his own since May 31, adding: “All the time this is going on, me and his mum can’t really be too far away from him.”

Daniel, who is a delivery driver for a building materials company, has not been able to work, saying ‘everything is at a standstill’. He said his family started a GoFundMe page at www.gofundme.com/f/Helpdylansfamilywhilehebattlesinhospital to ask for money to help them with bills, rent, expenses in London and food and childcare for their other children. The campaign has raised more than £7,000 of its £8,000 target and Daniel said he is ‘humbled’ and grateful to everyone who has helped. He said: “It’s actually quite overwhelming just to see the generosity of people.”

Daniel said he has been raising money for charity since Dylan was born and estimates he has raised about £30,000-£40,000 for the Williams Syndrome Foundation, which helps families of affected children. Visit williams-syndrome.org.uk. He said Dylan was diagnosed with the condition when he was 12 weeks old and experts at Stanford University in America estimated he would only live a year. He said: “He’s had absolutely no interventions with medications or anything up until May 31 and this is the first time they’ve actually had to do something.”

“It’s hard to see him in the state he’s in at the moment,” said Daniel adding: “It’s moving very slowly in the right direction.”

But he said: “Every day he's in the ICU is another day where he could get another infection.”