Immersed in water, surrounded by fairy lights and cradled by the three people who love her most – this was Evelyn Rose’s dream.

She’s been described as a warrior princess, the light of her parent’s lives and an inspiration to everyone who met her.

Now, after four years of fighting a condition so rare it doesn’t have a name, little Evelyn Nolan has died.

But not before her family received the support of all the hospital staff who have cared for her during her life to pull off the ultimate gift and something they believe has never been done before.

The youngster battled constant epileptic fits and severe chest infections which her body was too weak to fight and saw her on life support more than 20 times – but her parents have said she was always a “tough cookie.”

Now Elliot and Debbie Nolan have paid tribute to their “beautiful darling girl” and the hospital staff who worked to make sure they had the most precious memory of their daughter before she died.

The couple, who live in Southampton, have said they will be eternally grateful to everyone at Southampton General Hospital for making Evelyn’s dreams of being in the water come true.

It comes after staff at the hospital worked for 24 hours to find a way to make it happen and keep her attached to her ventilator, something they do not believe has ever been done.

But they succeeded and two days before Evelyn died she was taken down to the hydrotherapy pool with her parents and brother Fergus, 7, where a team of more than 30 staff had covered the room in fairy lights and were playing Evelyn’s favourite music ready for her swim, with a small team going in the pool with the family to keep Evelyn's tube attached so she could breathe.

Debbie 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.”

Debbie and husband Elliot 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 said her daughter was always “full of gumption.”

The 41-year-old mum-of-two, who works for IBM, 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 the water. Evelyn could be in the middle of a seizure and you’d put her in the 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.

"We are so grateful to everyone who has helped us over the years, to everyone at the hospital, at Naomi House, Rosewood Free School where Evelyn would go to school and to all those who helped adapt out home for her, everyone has made such a big difference and helped us make Evelyn's life the best it could be."

Elliot, 43, who gave up his job as a teacher at Weston Park Primary 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.

"In the future we would like to leave a legacy for Evelyn with some form of charitable trust, we want to find a positive from this and make sure she lives on somehow, for such a short time on this planet she has made a very big impact on everyone."

Evelyn’s grandparents, Eastleigh FC chairman Roger Sherwood and wife Jenny and Elaine and Graham Vavangas said in a joint statement: “While the last few weeks and days have been tragic the outpouring of love and concern and help we have received has been immense.

"To the PICU, physio team, caring nursing professionals from G2 Neuro, HDU and Naomi House who have looked after Evelyn, we are so grateful. We as her grandparents will never forget her and will lover her forever.”

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.

“The process involved modifying ventilator tubing and infusion cables to ensure the devices stayed out of the water and having spares of everything on stand-by in case we encountered any problems in the water.

“It was a real team effort, with myself from a medical viewpoint to ensure Evelyn was safe and comfortable, physiotherapists who helped with the swim itself, PICU nursing staff and palliative care nurses who supported the family and managed Evelyn’s drugs and PICU technicians who helped design and set up the circuits and waterproof seals.

“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.”

Evelyn's condition

Born on Christmas Eve in 2011, Evelyn was called her parent's "Christmas magic."

At three-months-old the youngster suffered from fits and by nine months old she was diagnosed with a genetic condition so rare it is believed only a handful of people in the world suffer from it.

Then came months of hospital visits and a year of anti-seizure medication which appeared to help Evelyn.

She was a fighter and defied the odds to survive and when her condition worsened, despite doctors telling her parents she would have only weeks to live at two-years-old, Evelyn kept going.

At her worst Evelyn fitted more than 300 times a day and she endured brain damage, a collapsed lung, pneumonia and severe side effects from her medication and then she went into status – constant fits.

She suffered from global developmental delay, had holes in her heart, reflux disorder, severe intractable epilepsy and the fits left her with low chest tone making it sometimes impossible for Evelyn to breathe on her own.

At the worst times when her fits were strongest, Evelyn would be put into an induced coma and in her last few weeks Evelyn needed a ventilator to breathe for her.

Anyone who would like to donate in Evelyn's memory can donate to the Friends of Evelyn Rose, a trust which Elliot and Debbie are now working to set up in their daughter's memory: www.gofundme.com/2dy7qgvc