Family trying to get son to US for life-saving transplant due to so few UK organ donors
Parents of a three-year-old boy waiting for a multi-organ transplant are attempting to raise £1m so they can seek treatment in the US in a bid to save his life.
Ralph is one of 230 children in the UK who are in need of a life-saving organ donation, the highest number in almost a decade.
He was diagnosed with liver cancer in January and in May he went into surgery for a liver transplant when doctors decided to abort the procedure because the cancer had spread to his pancreas and bowel too.
He now needs a multi-organ transplant from a child of a similar size.
Children who die are presumed to have opted out from organ donation, unlike adults, and only half of all families of children approached about organ donation say yes. This has led to a shortage of donors, according to NHS Blood and Transplant (NHSBT).
In comparison, the consent rate for child organ donation in the US stands at 75%.
“We’ve been advised that that is our best option to go to America,” said Katie Tatham, Ralph’s mum, speaking to Sky News at her home in Essex.
“It’s absolutely our last resort. We were really hoping a donor would come up in time in the UK, but unfortunately it hasn’t and we just don’t have the time to wait.
“So we’ve launched a GoFundMe to try to raise £1m to save Ralph’s life.”
Ralph’s parents say more families need to say yes to organ donation.
“There’s so few donors that by saying ‘yes’ you would actually save another child’s life. And we’re not saying definitely do it, but we’re saying think about it in advance because you wouldn’t want to be in a situation where the first time you considered it was at the point of being in the worst situation.”
Six years ago, a tragic road accident left Loanna Ball’s daughter Keira with life-threatening injuries. Loanna and Keira’s father decided to donate Keira’s organs.
“I can’t believe she isn’t here,” she told Sky News. “It is a rubbish situation to be in. None of us wants to lose our children. Sadly it happens but the thought that actually she’s donating her organs and she’s living on in others is incredible… If we can benefit and support and help other people, why not?”
Max Johnson was the recipient of Keira’s heart. In 2017, the then prime minister Theresa May proposed a new law referred to as Max’s Law to launch an opt-out organ donation system for England.
“The law doesn’t apply to children,” explains Rachel Rowson, head of regional nursing at the NHSBT’s London Organ Donation Team.
“That’s why it’s really important for people to put themselves on the organ donor register and sign up. Regardless of children or adults, when we know somebody has opted into the organ donor register, we have a much higher consent rate.”
For many children waiting for organs such as a heart, lungs or bowel, like Ralph, they will need a transplant from another child who is a similar size to them. NHSBT says only 1% of people currently die in circumstances where organ donation is possible, but each donor who is able to donate has the potential to save up to nine people’s lives.
In Northern Ireland, the Organ and Tissue Donation (Deemed Consent) legislation is known as Daithi’s Law in honour of six-year-old Daithi MacGabhann who has campaigned for the law change. The 1st of June marked exactly five years from when Daithi was added to the transplant waiting list.
“It’s an up and down rollercoaster,” his father Mairtin MacGabhann told Sky News, describing the wait for that all-important call.
“Daithi was born with a severe heart condition called hypoplastic left heart syndrome, which means that he has half a heart.”
Daithi interrupts: “I’ve been waiting for a long time.”
Daithi’s family hope that paediatric organ donation can “become the norm”.
“Some people may think that it’s a lot to ask but what those people may not understand is it’s the only thing we can ask to see our children. So we want people to have more conversations about paediatric organ donation and hopefully it’ll just become the norm in society.”