It comes with huge regret that I write to announce the sad loss of our 15-year old niece Jamie-Leigh Usher who passed away in hospital on May 21.
Some readers will remember her story as she had featured in my column and The News several times over the past few years.
Born with Cystic Fibrosis, an inherited disease which affects the lungs and digestive system, Jamie-Leigh spent many a night in Alder Hey Children’s Hospital which became her home from home.
She was also diagnosed autistic spectrum, which proved an even greater challenge to both her and her family, especially where her eating habits were concerned and as CF sufferers generally struggle to retain fat and gain weight, she had been dealt a very tough hand in life’s big poker game.
She refused to let her disabilities define her, and with the assistance of a one-to-one, Jamie-Leigh attended a mainstream school where she excelled and recently graduated from Liverpool’s Hope University.
Though our family would admit to being biased about Jamie-Leigh’s personality she made friends wherever she went with a personality far too big for her tiny frail body. She would ask you lots of personal questions, age, name, middle name and so on and her autistic traits meant she could retain and access this information in a split second. Many an acquaintance received her unexpected birthday greetings by card and telephone.
Having visited Portsmouth many times during her short life she gained her very own Pompey fan club, many of whom would make special trips to Liverpool to visit her at home and in hospital.
Last April she became very ill and the CF team told the family to expect the worst. It was suggested that she wouldn’t last the weekend, however, after we arranged a surprise visit from one of her TV heroes, children’s presenter Dave Benson Philips, she made a recovery her consultant doctors claimed was nothing short of a miracle and, typically defiance, she was back at school within a month.
Shortly after we learnt that without a complete lung transplant she was unlikely to last more than a year and, following more tests and examinations, she was placed on the transplant list at Great Ormond Street Hospital. We recently received several ‘standby’ phone calls with potential ‘suitable donor matches,’ however, each time we were told to ‘stand down’ again. The last suitable donor came on May 10 though sadly, by this time, she was assessed to be too unwell for the operation. Just 11 days later she passed away with all her friends and family by her side.
The support and best wishes Jamie-Leigh received throughout her life and over the past year was unbelievable including video messages from Ollie Murs and her other favourite children’s presenters, Justin Guy Fletcher, AKA Mr Tumble, as well as numerous ‘shout-outs’ on Liverpool radio stations. Jamie-Leigh’s spirited personality became an inspiration to many people, in 2010 I ran the London marathon for CF and last year our friend climbed Mount Kilimanjaro for the same charity.
Liverpool taxi drivers, regularly raised money for CF and a couple of years ago sent her on a Christmas holiday to Lapland. My wife and her friends have a charity bike ride from Portsmouth to London planned for this October. A born entertainer Jamie-Leigh would regularly steel the show at family parties hijacking the microphone to sing her favourite songs which included old and new classics like ‘We’ll meet again,’ ‘Jolene’ and ‘Nobody’s Child,’ to more modern hits by Ollie Murs and Bruno Mars. Her funeral, attended by around a 1000 people, made the local TV Merseyside News and was befitting of such a special and much-loved child. One infant school teacher flew over from Ireland and, even though it was half term, over 30 classmates attended in full school uniform.
I was asked by her parents to read the eulogy they had written, which was followed by similar speeches from four of her teachers, past and present, each nailing her personality and having the mourners in both fits of laughter and floods of tears. Inspirational, funny, determined, smart, cheeky, sincere, inquisitive were just some of the single words her school friends offered to describe her.
As myself, her father, uncle and grandfather carried her coffin from the church to the gleaming white horse-drawn carriage outside, S-Club Seven’s ‘Reach for The Stars’ was played over the church sound system, another of her favourites, and the whole room began to clap and sing along. It was both both sad and surreal but completely fitting. Her wake too was similarly well-attended completely filling to capacity the ‘Venue’ in Huyton Village where photographs and videos of her were projected onto the wall. Though Jamie-Leigh has left a Grand Canyon-sized void in the lives of her friends and family, we have gained much comfort from the amazing funeral service and the hundreds of cards and condolences received in the days after her death. To quote the late great Muhammad Ali: ‘Don’t count the days, make the days count,’ and in her short 15-year life Jamie-Leigh impacted and reached more people than most of us will in an entire lifetime.
RIP our special angel.