4-year-old girl swims with her family for the first time before she di*s

A four-year-old girl with a one in 168 million condition was able to swim with her family for the first time just two days before she died in hospital.

Little Evelyn Nolan was cradled in the water by mum Debbie and dad Elliot while still attached to a life-supporting ventilator in what is believed to be a medical first.

Debbie, 41, said: “The minute she went in the water, she just relaxed and she was smiling the whole time. She has always loved being in water, and it was incredible to be able to give her that one final gift.”

Evelyn died less than 48 hours after her swim on Friday morning, in Southampton General Hospital, Hants, where she had spent much of her short life.

Inspirational Evelyn, who was born on Christmas Eve in 2011, was one of only 42 people in the world to suffer from her condition, and defied the odds to survive so long.

She had brain damage as a result of severe intractable epilepsy and was unable to lift her head or talk. At her worst, she fitted more than 300 times a day.

Evelyn also suffered from global developmental delay, had holes in her heart, a reflux disorder, and she needed a ventilator to breathe for her.

Her parents feared the ventilator would make it impossible for Evelyn to have a go at swimming, but staff were able to adapt their equipment so the family could have their moment.

Debbie, who works for IBM, said: “It was incredibly special and I can’t describe how grateful I am to the hospital for giving us that moment to treasure.”

Her parents, from Southampton, had to make the heartbreaking decision to turn off Evelyn’s life support after it became clear that the illness was too strong Elliot, 43, who gave up his job as a primary school teacher to be Evelyn’s full time carer, said: “Evelyn was truly inspirational for me.”

Dr Michael Griksaitis, a consultant in paediatric intensive care at Southampton Children’s Hospital, said staff had to modify ventilator tubing and infusion cables to make sure the key equipment stayed dry.

Dr Griksaitis praised the team effort, adding: “We are not aware of any previous cases of this happening in an intensive care setting, so to have given Evelyn and her family such a significant memory at such a difficult time means a great deal to everyone involved.”