An inspirational, one-of-a-kind 9-year old born with a rare heart condition sat down with his parents and told them he knew he was going to die.
Sadly he passed away not long after.
Henry Bromberg from Gloucestershire bravely faced over 30 operations, including three open heart surgeries. But before a heart became available to him, he died.
“Some people have heroes – footballers, singers, politicians or whatever – but he was always and always will be my hero,” his dad Robert, 61, told MailOnline in an exclusive interview.
But the brave little boy didn’t want his parents to worry, so he had an incredibly moving message for them.
“He said his heart wasn’t going to last as long as ours. He said he was going to die before us. He said he wanted us to live on and be happy and get on with our lives,” his dad says.
Henry inspired people all over Britain after an appearance on last year’s BBC Children In Need, where he spoke about his condition.
And according to his parents he lived life to the full, and never gave up hope that he would receive a new heart.
“My God did he live every single day to the full,” said Robert. “He gave everything. I don’t want to turn him into an angel but he really did give every day everything he possibly could.”
“He used to talk about being married and having his own children,’ added mum Laura. “He used to go to IKEA and choose what he’d have in his house when he was older. He had a complete life mapped out for himself.”
Now his parents are channelling their grief to bring about change in how organs are donated. They want the rest of Britain to adopt the Welsh opt out rather than opt in system, as well as greater transparency.
“We don’t know how many children are on the register,” says Laura. “We don’t know how many children get a heart and how many don’t. It’s very opaque. It’s very cloak and dagger stuff. It’s not clear how they allocate hearts. We could do with more openness.”
No doubt they want to do what they can to ensure no parents have to go through the pain they are.
“We’re sitting in an empty, silent house with a completely blank calendar,’ said Laura. “We’re missing him every second of the day and night.”
To learn more or to donate to the Henry Bromberg fund click here.
