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Baby Ruby clings to life on a ventilator as her parents pray their “little fighter” will beat the odds.
The five-month-old has spent her entire life in hospital after being born prematurely in October, weighing just 3lb.
Now Ashley Gawler and Gareth Carlile have launched a desperate search for someone with knowledge of the rare conditions threatening their daughter’s life.
The couple, who both work for East Kent Audi, in Canterbury, have been told Ruby is suffering with phrenic nerve palsy and bilateral diaphragmatic paralysis.
Both can severely affect a sufferer’s ability to breathe unaided.
“We just want to hear from anyone, either someone medical or a parent, who might know about her conditions,” said Ashley.
“They are quite rare and the doctors haven’t got much experience of other patients and are finding it difficult to treat her.”
Ashley, 20, has been a permanent fixture at her daughter’s bedside since she was transferred from Margate to St Thomas’s Hospital in London at just 17 days old.
Fiance Gareth, 29, juggles work at the dealership, where he is business manager, with regular trips to the capital.
Former Langton Girls’ pupil Ashley said: “The joy of having our first baby is not what I imagined it would be.
"All the normal things of having a baby that you look forward to just don’t happen.
"It’s very stressful because it’s very unclear what the future holds for her.”
Ashley, who met Gareth at work, where she is a receptionist, says family and friends have been a huge support to them during the ordeal.
Her mother, Alison Langley, is often at her side in hospital, with older sister, Liv Gawler, 22, also posting an appeal about Ruby’s plight on Facebook.
“I did it as a last resort because we are desperate to try to find out about Ruby’s condition,” said Liv, an academic mentor at the Spires Academy in Sturry.
“The support has been amazing. What Ashley and Gareth and the family are going through is horrific and we wouldn’t wish it on anyone.
"Ruby has fought on this far and we will never give up fighting for her.”
Ashley and Gareth have delayed any plans to marry, putting their all into fighting for Ruby.
“Obviously our marriage plans are all on hold as everything is focused on Ruby’s future,” Ashley said.
“We have nearly lost her a few times but she is a real little fighter.”
Since launching the appeal, the family have been directed to private specialists all over the world - but money is needed to follow up the leads.
Liv has set up a fundraising page to help cover any medical expenses, with donations already pouring in towards a £10,000 target.
She said: "Consultations, tests and the smallest of treatments are incredibly expensive and unachievable for our small family alone."
"The prayers received from our Facebook family have exceeded all of our expectations and we ask of you to continue your truly incredible support."