After a life-long struggle with one of the most horrible and demanding of all hereditary genetic and progressive conditions, Cystic Fibrosis, our daughter Flora Edward-Few died on December 8th 2014 in the Intensive Care Unit of The Royal Brompton Hospital in South Kensington, aged just 22, following the development of complications in her lungs caused by her CF.

Flora’s CF was originally confirmed when she was rushed to Birmingham Children’s Hospital from Worcester Hospital where she had been born prematurely by emergency Caesarean. A few hours later, her tiny heart stopped and although resuscitated, she was not expected to live. As you will realise, she did survive and we had the joy of seeing her grow into a beautiful young woman and live as full a life as you could imagine, for 22 years. Her life was however very tough; a regime of 150 plus tablets and six nebulisations a day and from her 16th birthday, the day it was confirmed, injecting insulin to cope with CF related diabetes.

Despite all this, Flora was a great fighter, determined and resolute, but sympathetic, supportive and loving to many others whom she always saw as worse off than herself. Often forgetting her own situation, she raised hundreds of thousands of pounds for Great Ormond Street Hospital and for the Cystic Fibrosis Trust.

Although never well enough to have normal work due to increasingly frequent hospital admissions, her passion for helping, encouraging and mentoring others became her ‘career’; conducted from her bed at home or in hospital, when she herself was very ill. At the Thanksgiving Celebration of her life, we heard from some of the 300 people there, as to how she had supported them, often in ways about which we knew nothing; by phone, by Skype and by email, often in the middle of the night. She was always available to whoever needed her help.

Flora lived her whole short life in Chesham and was a great lover of small children and had a wonderful natural affinity with them. At those times when she was well enough to do so, she would help out at Maryland pre-school in Chesham Bois alongside her mum, a teacher there for 17 years.

Such was her impact on others many have wanted to continue her mission to help others whenever she could, especially those trying to live with CF and their families trying to support and cope with a sick child. To this end, we want to help such children and their families.

In Autumn 2016, we made a grant of £5,000 to the Royal Brompton to fund a reflexologist for Foulis Ward, where Flora and so many of her CF friends spend so much of their time undergoing long programmes of treatment. Flora often used to say how lovely it was to have this, to just to zone out and relax having sat in bed or chair day in day out connected to IV drips and the like, undergoing rigorous and exhausting regimes of physio, feeling grim and because of cross infection risks, isolated from other patients. Our grant came just at the right time, as the funding that had been there for her some time historically from a trust had ended and she would not have been able to continue. We would also like to see what else additionally we can do for these brave young people personally and through other projects outside the hospital.

We have big, big plans for 2018 and would love to increase our funding potential to support two exciting new projects.

Firstly, we have recently made a grant of £2000 to The Royal Brompton Hospital to help fund a programme that will enable young CF sufferers to have check-ups and be cared for REMOTELY in their own homes using state of the art interactive diagnostics. This will enable them to have the FREEDOM to live their lives without unnecessary long trips to hospital for short routine appointments. This way, they will only to have to go in when they actually need hospital treatment.

We have also set up a protected restricted fund within Family Fund - the UK's largest charity providing grants for families raising disabled or seriously ill children and young people - specifically for young CF patients and their families who apply to them for funds. We have made an initial grant of £2000 to this latter protected fund which will enable us to have a much wider reach through their network to help CF children and young people all over the country!

THE FUND HAS NO COSTS; HENNY AND I BEAR SUCH COSTS AS THERE ARE AND EVERY PENNY THAT YOU GIVE HELPS CHILDREN AND YOUNG PEOPLE WITH CF DIRECTLY.