Arthurs Story -

After a lengthly wait, on Monday, the 27th of January 2025, the world was blessed with the arrival of our beautiful baby boy Arthur Hughes. We finally became a family, and our life felt complete.

Then devastatingly on Wednesday (29/01/2025) just two days after the most joyous moment of our lives, our baby boy Arthur, who is now our whole world, became critically ill.

We were devastated to be told that our boy may not survive the night as he had deteriorated so rapidly with no known cause at this time.

Our darling Arthur has been so strong and with the amazing help from the doctors and nurses at Alderhey children's hospital he survived the night and has now been transferred to a Specialist Metabolic Unit for Children in Manchester.

This distance from our child is breaking our hearts, but our Arthur is fighting hard every day to stay with us and win this battle against his recently diagnosed rare genetic, metabolic condition called

ornithine transcarbamylase (OTC - for short).

Only 1 in 77,000 children are sadly diagnosed with this deadly condition. OTC has had very little research, and the only known potential treatment is a liver transplant, which, as yet, he is not big enough to proceed with.

Our Arthur is so special and rare that he could soon be offered the opportunity to take part in a research trial (OTC- Hope) for a potential treatment involving gene editing as a possible cure! This fills us with hope but is also terrifying for us making these decisions while our child's life is at risk.

Arthur's family, mum, dad, grandparents, aunts & uncles are staying strong to fight as hard as Arthur is to get him better. Get him home to his Mummy, Daddy, and all his family. He needs his family by his side to fight this fight, and we know how loved he and his family are by everyone in our community.

If anyone can donate it will help Arthur’s mum, dad and family be by his side. If you can donate you can help the family fight as hard as they can for Arthur. Any money donated will help with travel cost and general living expenses for his family to be at his side. This is gonna be a very long and hard fight for them and Arthur, but we all know this little boy can beat the odds!

Thank you to everyone who has already donated and no matter what the donation, how big or how small please know his mum and dad (&all the family) appreciate your kindness and support.