Children’s Hospice Week: Parents of the boy who beat meningitis thank ellenor

More than two years after a Kent couple made the heart-breaking decision to turn off their baby’s life support machine, little Finley is miraculously preparing to start at nursery.

Sarah Burton and Mike Jones welcomed their son into the world four days before Christmas but soon realised Finley was seriously ill.

Mike, 30, said at first he didn’t open his eyes or feed properly but was eventually discharged from hospital.

The mechanic added: “During that first night at home, the situation deteriorated rapidly. From 1am he wouldn’t feed at all and, as the night progressed, be became yellow and floppy and his face turned purple.”

Finley was rushed to Evelina Children’s Hospital in London where he was diagnosed with Group B streptococcal meningitis.

Mike said: “It was just devastating. He was so tiny and helpless.”

Medical staff told the couple that Finley was unlikely to survive and advised turning off his ventilator.

Sarah, 28, said: “I can only describe feeling numb. I had no idea whether it was day or night – we simply sat within those four walls and watched Finley for hour upon hour.”

After saying a final goodbye they sat and watched his readings steadily fall but then, unbelievably, Finley started to show some signs of recovery. However, doctors warned that he was still only likely to live for two weeks.

After many sleepless nights and journeys to London, the couple asked if they could care for Finley at home at Sassoon Close, Larkfield. It was then that they were told about the charity ellenor.

'The first year was awful – neither of us slept – so that extra support was just what we needed'

It provides help to families dealing with terminal illness and the couple, who also have a six-year-old son called Alfie, say without its support they would be lost.

Ellenor provided 24/7 medical assistance, set up meetings with families in similar positions and arranged respite sessions and therapy.

“The first year was awful – neither of us slept – so that extra support was just what we needed," said Mike.

"Without ellenor our lives would be lonely and a lot more stressful.”

Now, Finley is preparing to start at a local nursery, a milestone the couple never expected and one which wouldn’t have been possible without the charity’s care.

Children’s Hospice Week starts on Monday with a theme of putting families first and seeks to raise funds and awareness for services across the country.

More details on ellenor here