Baby born with one of rarest conditions in the country is celebrating his milestone birthday this year. Parents Yvette and Ian tell AASMA Day about their inspirational child who has fought to overcome many, many obstacles.
A baby born on Christmas Day battling one of the rarest conditions in the world will celebrate the milestone of reaching adulthood despite initial fears he wouldn’t survive beyond the age of two.
Oliver Ashton, of Walmer Bridge, near Preston, will turn 18 this Christmas Day and his family is full of emotion as it is a day they once never thought they’d see.
Oliver has the extremely rare condition, Coffin-Siris Syndrome, which at the time he was born only affected a handful of people worldwide.
Oliver was born on Christmas Day 1999 and spent the first few months of his life in and out of hospital with breathing and feeding difficulties and infections and doctors were puzzled by what was causing them.
His diagnosis came about after a nursing sister who had seen a case of Coffin-Siris Syndrome years earlier, recognised the symptoms and tests were carried out and confirmed he had it.
It is a day we never dared imagine we would see.
Coffin-Siris Syndrome is named after the two doctors who discovered it.
Symptoms of the condition include prominent lips, long eyelashes, excessive hair, scoliosis, cleft palate, no finger nail on the little finger and a missing part of the brain which controls co-ordination and other functions.
Oliver is tube-fed through his stomach and is on oxygen 24-hours a day.
When Oliver was first diagnosed, doctors told his devastated parents he was unlikely to live past the age of two.
But battling Oliver has defied all the odds and despite many setbacks and close calls, this Christmas Day will mark his milestone 18th birthday.
Mum Yvette Browne, who also has sons Andrew, 29 and Sam, 22, said: “Oliver turning 18 is a real miracle and it hasn’t really sank in yet.
“We nearly lost Oliver two years ago when he became ill with a serious lung infection but then he astounded everyone by recovering.”
Oliver’s dad Ian Ashton, who lives in Penwortham, added: “Oliver has surpassed all expectations and him turning 18 is such a huge milestone.
“It is a day we never dared imagine we would see.”
However, Oliver’s family know that things are getting progressively worse for Oliver. Oliver has respiratory failure type 2 and has severe scoliosis which is affecting his lung function.
For the last 18 months, Oliver has not been in hospital and was doing well but he is now in hospital again after suffering breathing difficulties due to an infection, although his family are planning to have him at home for a few hours on Christmas Day.
The last two years have seen some changes for Oliver as he sadly lost both his nanas to dementia. However, he has become an uncle as his eldest brother Andrew and his partner have had a baby girl Penelope and his middle brother Sam has had a daughter Saffron.
Oliver’s family organised a birthday party for Oliver at the Dolphin Inn in Longton in advance of his actual birthday and Oliver enjoyed a few hours out of hospital celebrating the occasion.
Yvette, who is training to be a paramedic, said: “Oliver is a superhero so we had a superhero themed party for him with Captain America and Father Christmas.
“We affectionately call Oliver our superhero because of how brave and miraculous he is in overcoming his illness and every obstacle that has come his way.
“It was lovely for Oliver to get together with friends and family to celebrate his milestone.
“On his actual birthday on Christmas Day, we are just planning a quiet family meal.
“Oliver just carries on smiling and is always so happy. He brightens everyone’s day like he has always done.”
Ian said: “Our son is a fighter and has overcome so much in the last 18 years. It’s been a whirlwind but we wouldn’t change a thing
“We have learnt to take each day as it comes now and they are all a bonus.”