Heartfelt tributes have been paid to a ‘brave’ and ‘inspirational’ six-year-old girl who died after a long battle with illness.
In her tragically short life, Sky Haresign, of Sibsey Northlands, had to overcome numerous health challenges
But Sky’s final days were spent with her family in London on a trip organised by the Make A Wish Foundation, a charity which grants wishes for children and young people fighting life-threatening conditions.
It included a boat ride along The Thames, a visit to the London Aquarium and a princess makeover at Disney’s Bibbidi Bobbidi Boutique at Harrods.
Mum Helen Haresign, 38, said the family took ‘huge comfort’ from the fact their last days with Sky were filled with such experiences.
She said: “That is what has kept us going. She was with us, her grandparents, her brothers, their girlfriends.”
She added: “We weren’t in the hospital, she wasn’t poorly. It did just feel like it was the right time.”
Helen and Sky’s dad Roy thanked all those who have helped Sky and the family over the years, mentioning in particular the staff on Pilgrim Hospital’s children’s ward and the community nurse.
Roy said: “They become more like friends than doctors and nurses.”
Diagnosed at 16 months with Congenital Cytomegalovirus, the infection had left her unable to walk, talk or sit up by herself. Then, aged two, she developed epilepsy.
In 2012, she was found to have sclerosis of the liver and then went on to struggle against oedema (the build-up of fluid in the body’s tissues) and reoccurring infections.
In September last year, following tests at Leeds General Infirmary specialists gave her weeks to live, months if she was lucky.
On February 26, she passed away from liver failure as a result of an undiagnosed metabolic disorder.
Her parents said Sky, who attended Boston’s John Fielding Community School, was ‘truly brave’ and ‘inspirational’.
Helen said: “She was very strong.”
She added: “She was much stronger than us. She enjoyed going into hospital. She wasn’t fazed by blood tests, she wasn’t bothered by cannulas. She just took everything in her stride and carried on.”
Roy, 51, said: “She was a tough cookie.”
He added: “She was just a lovely little princess.”
Jo Micklewright, Head of Wishgranting at Make-A-Wish, said: “We are deeply saddened to hear the news of Sky’s passing. It was a privilege to have been able to grant Sky’s wish and help create some wonderful memories for the family – our thoughts are with them at this difficult time.”