I am very happy to be the first person to write an opening blog for Rosie’s charity. As Rosie’s mum and also Founder and Trustee of our very unique charity, I will not write from the stance of a trustee. I will write this as mummy to Rosie, and with total truth as it is now and as it was then--and hope that you agree that, although my daughter Rosie’s years on earth were tragically a great deal shorter than most, the power of her legacy and her extraordinary zest for life and the kind, caring way in which she lived it (at speed because she was always in a hurry) will have longevity.
I hope you will feel a sense through my writings/musings of her spirit, of the colours she brought to us and now to our rainbow children, and her driving force which propels us forward to honour her always.
So ….you may wonder how it all started.
Rosie was a gift of a daughter. She was sunny, friendly and funny, bright, warm-hearted and generous. She started at a little local prep school but soon insisted on going to Redroofs, our family business (and told us in no uncertain terms that if she wasn’t allowed, she would run away to London and go to stage school there!!).
She and her sister Ellie, who was three years older, had a blissfully happy childhood within our big extended family of cousins. We are a close knit but large and pretty sociable family and the highlights of our year were family days around the idyllic pool at Redroofs, Grandma's family home (also home of the late Ivor Novello) so steeped in theatrical history. When the girls were not swimming with Rosie’s ten girl cousins, they were raiding the extensive theatre wardrobe for costumes and putting on ever more elaborate musicals for any audience of any grownups they could muster in the tiny 40 seater theatre within the house, and when they had exhausted their list of Annie-type musicals they would write their own.
Rosie (right) and big sister Ellie.
When Rosie first became ill it was November 2002. Rosie was only ten years old and it was the Christmas panto season. She had never been ill before. At first she was diagnosed with a chest infection. She was really fed up as she was rehearsing to appear as Mini Mean, the sidekick to the baddie King Rat in Puss in Boots pantomime at the time.
She loved the cheeky character parts. She was never a "corps de ballet" sort of child and didn’t care for pink satin ballet shoes or pink tutus, preferring the comedy and dramatic roles, and used to relish playing pranks on the adult members of the cast. She was often to be found in the wings making the actors corpse on stage and they all fell about at her sense of fun and mischief.
She struggled on for a while dosed up on antibiotics for what doctors thought was a chest infection, then pneumonia, then asthma, but which grew rapidly worse. It was none of these things and she was forced much to her horror to drop out of the show as her illness escalated.
She was eventually diagnosed just after her eleventh birthday in December, with a rare auto immune disease called vasculitis which affected her lungs and her blood vessels. She was admitted first to Wexham Park hospital, and then on the discovery of a massive pulmonary embolism in the main arteries to her heart was blue lighted to the John Radcliffe hospital in Oxford where she was a patient for many months.
Rosie baking whilst in hospital.
Our normal world was turned upside down. All the usual everyday routines of work, school runs with her big sister Ellie, play dates with her bunch of theatre-mad pals, and even just walking our family Golden Retriever dog, suddenly seemed a million miles away.
I recall gazing out of the window of the hospital ward high up near the top floor in the old hospital and watching the normal world continuing down below and wondering how on earth our lives could have changed so much when everyone else was going about their daily business and nothing had ever happened to them. I was in emotional tatters and physically exhausted from lack of sleep and worry, but pretending to be strong for Rosie--and so on the odd occasion when I was asked if I was okay I would say I was fine in order not to detract the nurses' attention from Rosie and the other patients.
Rosie’s days (and mine as her mummy, since I was beside her through many months of treatment) now consisted of hospital procedure, long harsh painful operations, long difficult days and lonely fearful nights.
Rosie and I had become acutely aware of the lack of support available for the whole family. There was no support in place for stressed, frightened parents and little for the children to do to keep them amused and motivated.
Being proactive and a “doer” even though she was so poorly, Rosie decided that when she was better she would raise money for the children in her ward. In true Rosie fashion she thought all the other children were far worse off than she was.
Tragically, after 6 months of operations and treatment and 11 days on a ventilator following a cardiac arrest and pulmonary hemorrhage, Rosie died.
Following the untimely and horrific death of my beautiful eleven year old daughter, we decided to create a legacy for Rosie whereby children like her and families like us would be fully supported. So Rosie’s Rainbow Fund was born.
It was not difficult to decide what to do. We had to create fun, colour and creativity, and motivation for the children and also set up support for parents who, like me, had been thrust into a frightening, sterile hospital world where they are expected to be strong and capable while nursing their very ill children and juggling the care of other healthy siblings. The other urgent need was for careful support for parents who have lost their precious children. There truly is nothing worse in the world.
Rosie's Rainbow Fund team members visit the John Radcliffe Children's Hospital for Giving Tuesday December 2015.
In future blogs I will tell you more about Rosie as well as about the wonderful things we are doing. There will also be blogs written by our incredible team of therapists and our trustees. Maybe even by some of the parents we support and our rainbow children, too.
We have so much to tell you about and there is so much happening and I hope you enjoy the read. Do please let us know what you think.
With love and rainbows to you all,