Moving photos show a four-year-old girl who loved water swim for the first time… just two days before she died from one in 168 million condition
Evelyn Nolan's parents are now setting up a trust in her memory
THESE incredibly moving pictures show how a four year girl who loved water was able to swim with her family for the first time just two days before she lost her battle against a rare one in 168 million condition.
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 her daughter smiled the whole time during the swim and praised hospital staff, who worked for 24 hours to make the parents' dream happen.
She said the experience they shared with their 'warrior princess' was 'magical' as the hospital's hydrotherapy pool was decorated with fairy lights and music played through speakers.
Debbie, a mum-of-two, said: "She just absolutely loved it.
"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 later at 3am on Friday morning, in Southampton General Hospital, Hants, where she had spent much of her short life.
Debbie added: "I can't really put into words how much it meant. It was just amazing.
"I wanted to share the story because the hospital had done this amazing thing, and there was no hesitation on their part.
"They didn't ask 'How can we do this?' They simply said 'This is how we do this'."
Inspirational Evelyn, who was born on Christmas Eve in 2011, is 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.
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She also had to battle against severe chest infections which her body was too weak to fight and she even needed life support more than 20 times.
Evelyn also suffered from global developmental delay, had holes in her heart, a reflux disorder, and she needed a ventilator to breathe for her.
But her parents, from Southampton, always said she was a 'tough cookie' and are eternally grateful to the hospital staff who worked to make sure they had the most precious memory of their daughter.
Ultimately, staff found a way to make it happen and keep h
er attached to her ventilator, something they do not believe has ever been done.
Brother Fergus, 7, joined his parents in the pool as the team of more than 30 staff watched and were ready for any complications.
Debbie, who works for IBM, said: "It's a moment I will never forget, that image of walking into the room and there just being fairy lights everywhere.
"Evelyn and I love twinkly lights, and all those people who have been with us through it all have become our extended family, it was just magical.
"I had the biggest grin on my face the whole time and as soon as Evelyn got in the water you could see her eyes light up.
"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 had to make the heartbreaking decision to turn off Evelyn's life support after it became clear that the illness was too strong and she had become too weak to fight it.
Debbie, paying tribute to her daughter, said: "She was just amazing. Evelyn loved Disney, she loved music and seeing vibrant colours.
"She loved the sunshine and being outside, Evelyn had this gorgeous tanned skin and she loved being close to all the flowers.
"But she loved her brother Fergus more than anyone else in the whole wide world.
"She loved a cuddle and being in water. Evelyn could be in the middle of a seizure and you'd put her in water and it would stop almost immediately.
"She was a beautiful girl. She was tough, we call her our warrior princess.
"We always said we would fight as long as she did but this time we could feel that she was just too tired.
"What she went through is way beyond what we can imagine coping with but she kept fighting, she is the strongest person I will ever meet."
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.
"It was a joy to look after her, to help her get through life and she was the light of ours, even through all the difficulties she inspired me that we should never give up."
The family praised the efforts paediatricians, doctors, nurses, physios and technicians who cared for Evelyn in her final months, saying: "We cannot thank them enough."
Dr Michael Griksaitis, a consultant in paediatric intensive care at Southampton Children's Hospital, said: "Evelyn was a very brave young girl who so many of our staff were extremely fond of and we feel immensely privileged to have provided such a special experience for her and her parents."
He explained how they had to modify ventilator tubing and infusion cables to make sure the key equipment stayed dry, and had spares of everything nearby.
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."
Elliot and Debbie are now working to set up a trust in her memory, with donations at