Roffey Football Club is to host a charity football match in memory of a baby who died of a rare medical condition.
Organiser James Gregory is the uncle of a baby who died just two days after being diagnosed with a rare condition.
He is running the event after his sister, her mum, launched a fundraising campaign for the hospital where she was cared for.
Mum Catherine Gregory spoke of her loss this week in a bid to help others. Her little daughter Georgina was just eight months old when she died.
“Everything had seemed normal,” said Catherine, 36. “The only problem was she was not willing to eat a lot.”
Catherine and Georgina’s dad, Karl Craddock, took Georgina to the Royal Alexandra Hospital in Brighton from their home in Crawley.
Tests revealed Georgina had low oxygen levels and was suffering from pulmonary vein stenosis - a rare heart condition.
“They were just doing the normal tests when she arrived and noticed her oxygen levels were low,” said Catherine.
Georgina was incubated and transferred to the Evelina Children’s Hospital, part of St Thomas’s Hospital in London, where she died just two days later last December.
“It was a shock,” said Catherine. “The only problem she had was that she wasn’t feeding properly. Then she was diagnosed and we were told there was nothing they could do. We weren’t expecting that at all. We were expecting her to come home.”
Georgina had been born ten weeks early and Catherine thinks that her premature birth may have had something to do with her illness. I don’t know if it is more common in premature babies,” she said.
Pulmonary vein stenosis is a rare condition in which there is a blockage in the blood vessels that bring oxygen-rich blood from the lungs back to the heart.
“When Georgina died it all happened so quickly,” said Catherine.
“But everyone at the Evelina Hospital was fantastic, they were really great.
“The staff kept us informed of what was happening and were very good.”
Now Catherine, a business development advisor at Central Sussex College, and Karl, 36, an aircraft parts inspector, want to help other parents and children.
James is organising a football match at Roffey Football Club on June 4 to raise money for the Evelina.
The family have not set a target on the amount they want to raise for the Evelina Hospital from the charity football match.
“We just want to raise as much as we can,” said Catherine.
For information about the hospital go to www.evelinalondon.nhs.uk