‘Arthur is living on borrowed time. We need someone’s help’
The family of a baby who were told he wouldn’t live longer than one week are pleading for the city’s help. Looking at Arthur Hughes, baring a huge smile on his face, you’d have no idea that just 12 hours into his life he was rushed to A&E and would spend the next several months at Alder Hey.
Dad Ronnie Hughes, 29, from Everton, was so happy to take his young family home from the hospital after partner Ellie Williams, 30, gave birth to Arthur in January, last year. The happy occasion soon turned into the “scariest” months of the parent’s lives when doctors confirmed Arthur was “critically ill.”
Ronnie said: “We were home for about 12 hours and he fell unwell. He’d started having seizures, we rushed straight to Alder Hey. We were taken to the emergency department, he was having cardiac arrests.
“We found out he had high ammonia levels. Genetic testing was done and it found he had five missing genes, two that are critical.”
Doctors told the parents Arthur had ornithine transcarbamylase deficiency (OTC), which according to NHS is a rare, inherited genetic condition where the liver cannot properly process ammonia. Ronnie and Ellie were told Arthur might not survive the night.
Ronnie said: “It was so difficult for all of us, the whole family, we have all been through it together. It has been a hard time for everyone but Arthur has gone against all the odds and got further in life than he was ever supposed to.
“We never thought we’d make it out the emergency department, that he would live past one week, he is a miracle and now he will be one on Tuesday.
“For the first few days of his life we were living by the hour, nobody knew what was going to happen. He was in hospital for the entire time, until around Christmas where we got to bring him home for a few days.
“But, Arthur is on borrowed time. The longer he lives with his condition the harder it gets to manage and he urgently needs a transplant.”
For patients with Ornithine Transcarbamylase (OTC) deficiency a liver transplant is considered the only curative treatment to stop ammonia from building up in the blood. However, to have the treatment Arthur will first need to have a blood transplant to urgently reduce life-threatening, high ammonia levels in his bloodstream.
Arthur has since been referred to Royal Manchester Children’s Hospital’s metabolic team, who specialise in metabolic diseases (IMD), where he hopes to have the treatment.
Sadly, Arthur’s mum, dad and grandmother aren’t a blood match and the family are now pleading for people across our city to help their son.
They’re urging for anyone who is a blood type O negative to get tested to see if they are a match and save their son’s life. Ronnie said: “He will turn one on Tuesday, he has given everything he can to fight to still be with us and now we need to do everything we can to help him out.
“Sadly nobody in our family has matching blood so we need to go public and ask for anyone who can help us help our son. He is incredible and it would mean everything to our family.”
If you do have a blood test and find out you are a match and would like to help, please email [email protected].
Get all the big headlines, pictures, analysis, opinion and video on the stories that matter to you by signing up to our daily and breaking newsletter.
Sign up to our breaking news newsletter here. Follow us on X @LivECHONews or on Bluesky @liverpoolecho.co.uk
– official Liverpool ECHO accounts – real news in real time.
We’re also on Facebook/theliverpoolecho – your must-see news, features, videos and pictures throughout the day from the Liverpool ECHO.
Join the Liverpool ECHO Breaking News and Top Stories WhatsApp community to receive the latest news straight to your phone by clicking here.
Story Saved
You can find this story in My Bookmarks.Or by navigating to the user icon in the top right.
