Why we do what we do.
We have a fantastic reputation within the Cystic Fibrosis community for providing UK based respite breaks for the most deserved families. The constant stream of referrals that we receive proves that there is a great need for the work we do. On a daily basis these brave children have to adhere to a regime of chest physiotherapy up to 4 times a day, take numerous antibiotics and inhalers and also digestive enzymes before they eat anything. Many have frequent spells in hospital where they undergo monthly courses of intravenous antibiotics. The parents and siblings often can’t cope with the worry of seeing their loved ones endure so much, which is why the benefits of a respite break can be immeasurable to the whole family not just the child. We like to speak with the families when they arrive back from their breaks and we are often being told how much the child’s health has improved, how much less stressed they are or simply that the family have had a fantastic time with everlasting memories.
We work with all of the major hospitals and C.F centres in the U.K all of whom agree that the breaks we provide are a vital part of a C.F child’s treatment. All of the families that we provide breaks for are referred to us by either the Consultant, Nurse or Hospital Social Worker. The CF team are vital in identifying the neediest cases; by only working with referrals and not accepting applications directly from families it means that the full screening process for eligibility is undertaken by the hospital and is based on the child’s health and wellbeing, thus ensuring it is the truly needy families that benefit. We provide a full service for the families, including arranging and advising on suitable locations within the UK, booking and paying for the holiday and travel costs. This way we take all the stress away from the families.
What is Cystic Fibrosis?
Cystic Fibrosis is a common hereditary disease which affects the entire body causing progressive disability. CF is caused by the body producing thick sticky mucus which clogs the lungs and digestive system. CF is a terrible life threatening illness that affects these children on a daily basis. Continuous trips to hospitals for in-patient and out-patient appointments not only mean that they are deprived of a normal childhood doing what healthy youngsters can do. The effects are felt through the whole family, parents and siblings. There is no cure for CF.
We have come a long way from where we started in 1994. In that first year we sent away just 16 families, we now average around 200 families per year. We also have our Emergency Fund which has been set up to help families who need a respite break at very short notice, usually due to how seriously ill the child is. This could be because the child only has weeks to live or is on the heart lung transplant list and is awaiting a donor.