Brave little Leo Reed means the whole world to his parents Claire and Ollie in more ways than one.
Because he’s the only known person on the planet with a particular genetic sequence in his DNA that almost killed him.
And it took a liver transplant to save Leo at only five months old after he was diagnosed with an illness described by a top consultant as “an extremely, extremely rare condition”.
Leo, now three, beat the odds to be born at all. He became a “rainbow baby” after his mum had a series of miscarriages and went through a failed IVF before further fertility treatment finally worked.
Now there’s no stopping the plucky lad. His recovery was so remarkable he was able to take part in the British Transplant Games in 2022 as a tribute to his donor and their family.
So it’s no wonder proud Claire, 43, married to musician Ollie, 38, says: “We tell him every day how amazing and special he is. We talk to him about his transplant. I’ll say, ‘Show mummy where they put the magic in,’ and he pulls up his top and rubs his tummy.
“And we can’t thank his donor and their family enough. We think of them every day. Without them the baby we’d longed for would not be here.”
Claire and Ollie met in 2012 and married in 2014. They soon started trying for a baby, but five pregnancies ended in unexplained miscarriages.
Finally, after failed private IVF in the UK, the couple flew to a Greek clinic recommended by a friend.
Claire, of Bristol, says medics there carried out an op to prepare her womb lining first before the IVF, and it worked first time. “They were so much more supportive there. I knew as soon as I had the IVF I was pregnant. You should wait two weeks before you test, but I didn’t.”
When Leo was born by caesarean section in May, 2020, at 7lb 10oz, he looked so healthy. Claire says: “I was so overwhelmed. We felt a massive high.” But after four weeks back home she sensed something wrong.
Leo was breastfeeding constantly and had an upset tummy, producing bright green poo. Her GP sent her to hospital. After a barrage of tests doctors at a specialist liver unit in Birmingham gave Claire and Ollie the shattering news that Leo needed a liver transplant to survive. “We were devastated,” says Claire. “I was scared to sleep.”
Leo has a rare condition immunodeficiency 47 – a disorder affecting a vital process, mainly in the liver, that binds carbohydrates to other molecules such as proteins in the body.
The agonising wait for a donor began. Claire says: “Every day Leo became more yellow and jaundiced. We prayed his gift of a liver would come in time and it did.”
Astonishingly a donor was found for Leo within weeks and he had his transplant in October 2020.
“The surgeons said they’d been amazed Leo kept fighting for so long with his native liver,” says Claire. Dino Hadzic, Professor of Paediatric Hepatitis at Kings College Hospital, London, told us: “The condition he has is extremely, extremely rare.
“Only occasionally are cases as rare ever reported. There was an abnormal biochemical process that mainly takes place in the liver cells.
“The transplant has rectified the problem, but he will need to be on medication to prevent rejection of his new liver for the rest of his life.” After three-and-a-half months in hospital, Leo was allowed home. Since then, he’s gone from strength to strength.
He took his first independent steps on December 7, 2021 and was toddling by Christmas. Claire says: “It has been miraculous. He has shown such determination. I think that’s what’s kept him going.”
In July last year, Claire took him to Leeds to take part in the British Transplant Games. She says: “I wanted him to do the donor run to remember our donor. Leo loved it. To see him running around was amazing.”
This year, he will compete in the ball throw, obstacle race, archery and a track race at the 2023 Games in Coventry. Claire says: “It’s been so emotional watching him climb, run and jump. When he goes to sleep at night I tell him, ‘Everything is fine, everything is good, everything is working just as it should’.
“But none of this would have been possible without people joining the transplant register. We’ll be eternally grateful and have written to our donor’s family. Without them Leo would not be here.”
Visit childliverdisease.org for more about the Children’s Liver Disease Foundation. Details of the Transplant Games at britishtransplantgames.co.uk
