Celebrating becoming a teenager, Jamie Hodgson poses for a picture with a delicious looking chocolate cake – but the 13-year-old who has survived against the odds will never be able to taste the sweet treat.
A catalogue of complex health needs means Jamie, born with congenital heart disease, has to eat jarred food made for six month old babies and gets most of his nutritional needs through a gastrostomy tube that goes directly into his stomach.
But despite his difficulties last Tuesday was a day of celebration for Jamie and his family as he turned 13 – a day his parents feared they would never see.
Dad Eddie, of Tring, said: “It was very emotional. It was happy and sad for us really.
“It is fantastic that he has reached this landmark but because we know what we know – we have always been told teenage years are his life expectancy We just wish we could stop the clock and live in this moment.”
Parents Eddie and Christine, who have been told on three occasions to plan Jamie’s funeral when he has taken turns for the worse, strive to make every day special for their son. The family including his sisters Jodie, 15, and Michelle, 25, enjoyed a second trip to America this summer.
They stage charity events to raise the money needed for special outings and Eddie - who is unable to work for health reasons – recently sold his signed England shirt to boost funds.
But the family have come under criticism for their lifestyle with some even questioning the seriousness of Jamie’s ill health.
The couple get eight hours of respite care a week but this only started three years ago.
They usually go to the cinema on a Tuesday night and visit a local pub on Friday nights. The rest of their time is spent caring for Jamie around the clock and ensuring daughter Jodie gets the attention she needs.
Eddie said: “They are judging our lifestyle and they haven’t got a clue.”
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