Stevenage family’s charity pledge after two-year-old’s death

THE family of a two-year-old boy who died from an extremely rare terminal condition has vowed to set up a charity in his honour.

Cameron Gover, who was born with a life-limiting condition called Schinzel-Giedion Syndrome (SGS), died at Lister Hospital in Stevenage last month.

Since the first diagnosis in 1978, there have been just four confirmed cases of SGS in the UK and Cameron, who lived at Willows Link in Stevenage, was the last known survivor.

The condition, the result of a genetic mutation, has a number of symptoms including epilepsy, skull and body deformities, problems with neurological and body functions, and has an average life-span of just two years.

Cameron’s mother Louise and grandparents Sue and Garry have been caring for him since birth, feeding him through a tube, adminstering different types of medication and supplements, using more than 3,000 disposable syringes a month and accompanying him to hospital, where he spent much of his young life.

Both Cameron’s grandparents gave up their jobs to care for their grandson, with Garry released from his role as a community development officer at North Herts District Council on compassionate grounds.

Cameron’s life was celebrated at a funeral at St Peter’s Church in Stevenage last Wednesday, and his family has now said they want to help provide support for those in similar circumstances.

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“Cameron rarely enjoyed long periods of good health and he could not talk or feed normally or sit up unaided, being confined most of his life to his specialised high chair,” said Garry, 53.

“He was an exceptionally contented child who rarely complained, even though he was often in pain. He’d faced death seven times.

“Cameron was often described as ‘beautiful’ and ‘angelic’. His rare smiles lit up a room.

“People of all ages were drawn to him, and this was very evident at his funeral which was packed with family, friends, health professionals and those who had become our friends during the last two years because of Cameron.

“This little boy touched the hearts of so many people, more than we ever could’ve imagined.”

The Govers will set up the Cameron Gover Foundation Trust in January to provide support for other families with life-limiting conditions, as well as write a book about the life of Cameron and what obstacles were overcome.

“We will not stop because Cameron is not here, we want to use this very personal experience to give something back to society,” added Garry.

“We know about all the things we’ve had to go through and we want to help people, let them know what benefits they’re entitled to and provide moral support.”

For more information about the charity email