Pembrokeshire branch of the CF Trust sets £40,000 fundraising target to mark 40th birthday

Our campaign will bid to mark the landmark 40th anniversary by raising £40,000 across 2018 to help the Cystic Fibrosis Trust continue its remarkable work and pursue the ultimate aim of finding a cure for the condition.

This association will also mark the role the Telegraph has played in the development of the branch from the very start.

Moving stories across the past 40 years have illustrated the struggle faced by families of CF children, the heartbreak of lives ended too soon and the confidence that research and improved treatment will one day lead to near normal lives for those living with this condition – and eventually a cure.

The campaign will be formally launched at a Civic reception hosted by the chairman of Pembrokeshire County Council, Councillor Paul Harries and attended by representatives of the Pembrokeshire Cystic Fibrosis branch.

Fundraising events across the year will be highlighted by the Western Telegraph and readers will have the opportunity to attend or support these events or back the campaign simply by making donations direct to the CF Trust.

Cystic Fibrosis affects more than 10,400 people in the UK 12 of whom are in Pembrokeshire.

All are born with the condition and face a daily struggle for the rest of their lives.

One in 25 of us carries the faulty gene that can be passed on to our children.

In people with cystic fibrosis the lungs make thicker sputum (mucus) than normal, which can trap bacteria in the small airways and lead to infection.

Symptoms that typically develop include persistent cough, wheezing, shortness of breath and breathing difficulties and repeated chest infections.

There is no ‘average’ life expectancy for people with CF, more than half of those who have this debilitating condition are now living beyond the age of 40, thanks to advances in treatment and research funded through fundraising.

Pembrokeshire CF Trust chairman Sybil Edwards said: “The 40th anniversary of our branch is a significant milestone and an opportunity to celebrate what has been achieved by the incredible contribution of all those people involved with the trust who have worked tirelessly on behalf of sufferers and their families.

“It is also an opportunity for us to make a huge difference for the future and our £40,000 fundraising target for the 40th year will be a mighty challenge, but with the help of the wonderful people of Pembrokeshire and the readers of the Western Telegraph I am sure we will achieve it.”

Sybil, a former Western Telegraph Chief Reporter, first raised awareness of Cystic Fibrosis during the formative years of the trust in Pembrokeshire when writing about the problems facing CF families in caring for a child with what was then a little known condition, even in medical circles.

Sybil had been approached for help by Grace Lloyd of Cromie Avenue, Haverfordwest.

Grace was the mother of 14-year-old Mark, the oldest of Pembrokeshire’s seven diagnosed Cystic Fibrosis patients.

Grace’s aim, through her years of experience, was to offer support to other parents who were facing the devastating news that their much loved child had what was to them an unknown condition, an incurable condition, with limited life expectancy.

Grace knew, all too well, what it was to feel desperate and alone, to feel that hers was the only family facing constant fear.

When Mark was four months old he was so desperately ill that he was baptised in hospital with the staff nurse and sister acting as god parents. Grace nursed him through meningitis, various chest infections, pneumonia and hepatitis.

With his mother’s strength behind him Mark grew into a well balanced young man, despite a life full of restrictions.

He had longed to follow his elder brother in joining the Royal Navy - or becoming a professional footballer.

His diet was strictly controlled – no chocolates, no fats – he put up with a daily diet of 18 tablets, various medicines , antibiotics and vitamins plus daily chest therapy to clear his lungs.

He missed months of school yet managed to get excellent exam results.

Meeting Mark proved to be a life changer for Sybil.

"He went straight to my heart" she says. 

"He faced life with courage , determination and a smile. Grace and I developed a lifelong friendship fundraising together for the work of the Cystic Fibrosis Trust and, for me, Mark held a special place as my ‘adopted’ son.’"

At this time Mark was nearing the then life expectancy of a CF patient. But with the major advances in treatment, the result of research paid for by the CF Trust, and a heart /lung transplant in 1996 Mark lived to see his 40th birthday, leading a full life and holding down a job right up to the last few days of his life.

His passing in September 2004 was doubtless hastened not by Cystic Fibrosis but by the tragic death of his beloved son Josh who had been killed in an accident just three months earlier.

In 1964 when Mark was born the London based Cystic Fibrosis Trust had just been established and at that time 80% of people born with Cystic Fibrosis died before the age of five and 90% before reaching their 10th birthday.

As more local cases were diagnosed the Pembrokeshire branch developed into a family of parents, grandparents and caring friends and the relatively small branch set about fundraising with considerable vigour.

Ambitious targets were set and exceeded. Pembrokeshire’s voice became significant. The attention of the Health Authority was drawn to the number of CF patients in the county, resulting in improvements to the local service.

Protests that families had to travel to Cardiff for their appointments brought about the establishment of a CF clinic at Withybush, attended by a consultant from the Cardiff hospital.

The branch’s annual public meetings were addressed by leading CF consultants. These meetings were attended not only by the families but also by some of the local physicians and also by a number of medical students .

Knowledge of Cystic Fibrosis was spreading. Over the years hundreds of thousands of pounds have been raised in Pembrokeshire making a massive contribution to the work of the CF Trust.

Chairman Sybil Edwards added: “The money raised in our 40th year campaign will enable the CF Trust to continue to invest in cutting edge research which is aimed at, one day, finding a cure for CF as well as continually improving standards of clinical care at specialist centres and clinics across the UK.

“We are so grateful to the Telegraph, not only for supporting us in this anniversary year, but for being with us from the start and keeping this important issue in the hearts and minds of Pembrokeshire people for the past 40 years.

“We know that around half of those living with Cystic Fibrosis will now survive past forty and It is thought that a baby born today with Cystic Fibrosis, using treatments currently available, could have a near normal life expectancy.

“But there is still no cure. The fight continues ... and this special year of fundraising can help support this fight.”

Western Telegraph editor Steve Adams, said: "The Western Telegraph is delighted to join with the Cystic Fibrosis Trust in Pembrokeshire in this special year of fundraising.

"The WT and the Trust share a special bond with the Trust being born from Sybil's meeting with Mark and his family while working for the Western Telegraph.

"We hope to help the Trust hit their £40,000 target in 2018 and so help many, many more families who are affected by Cystic Fibrosis."

* Donations payable to Pembrokeshire CF Trust can be sent c/o Newsroom, Western Telegraph, Western Tangiers, Fishguard Road, Pembrokeshire, SA62 4BU.