The parents of a four-year-old girl with a very rare disease have shared the heartbreaking photos of their daughter swimming with them for the first time just two days before she died.
Evelyn Nolan is one of only 42 people in the world or one in 168 million to suffer from her condition, and defied the odds to survive so long.
Evelyn, who was born on Christmas Eve in 2011, had brain damage as a result of severe intractable epilepsy and was unable to lift her head or talk. At her worst, she had more than 300 seizures a day. She also had to battle against severe chest infections which her body was too weak to fight and she needed life support more than 20 times.
Worse, Evelyn also suffered from global developmental delay, had holes in her heart, a reflux disorder, and she needed a ventilator to breathe for her.
Because of her condition, she has spent much of her short life in Southampton General Hospital, Hampshire.
Just two days before she died, her parents, Elliot and Debbie, from Southampton, thought of making a moment that their family will treasure, so, they decided to go swimming with Evelyn who loved to be in the water. “She has always loved being in water, and it was incredible to be able to give her that one final gift,” she said.
Last week, Mrs Nolan has asked hospital staff if it’s possible for Evelyn to swim in the water with all the gadgets attached to her, and the hospital readily agreed and ultimately found a way to make the family’s precious request happen and keep her attached to her ventilator, something they do not believe has ever been done.
Evelyn’s brother Fergus, 7, also joined his parents in the pool as the team of more than 30 staff watched and were ready for any complications.
The whole family were over the moon as they swam alongside Evelyn, who was pictured being cradled in the water by her parents while still attached to a life-supporting ventilator in what is believed to be a medical first.
However, the hospital staff did not just that but also decorated the hospital’s hydrotherapy pool with fairy lights and music played through speakers, which the young Disney fan loved.
“She just absolutely loved it.
“The minute she went in the water, she just relaxed and she was smiling the whole time,” Mrs Nolan said.
Then, less than 48 hours later at 3am on Friday morning, in Southampton General Hospital, Hampshire, the family made the heart-wrenching 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.
“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,” Mrs Nolan said.
The family praised the efforts of paediatricians, doctors, nurses, physios and technicians who cared for Evelyn in her final months, and are eternally grateful to the hospital staff who worked for 24 hours to make sure they had the most precious memory of their daughter.
Elliot and Debbie are now working to set up a trust in her memory, with donations being collected on a GoFundMe page.