Please help us in raising funds for Cystic Fibrosis Trust.

The reason we’re choosing to support this incredible charity is because one of our valued Project Managers is unfortunately having to work very closely with CF Trust.

Tim Pelerin is a dedicated dad to his daughter River, who was born with Cystic Fibrosis.

If you’re wondering what CF is, find out more about this life-limiting illness here - www.cysticfibrosis.org.uk/what-is-cystic-fibrosis.

We want to work with Tim and CF Trust to support them in raising funds and awareness. If you would like to support this charity with us, please donate.

Tim has kindly shared his story with us here. Please take some time to read about his family’s experience and his incredible daughter, River.

"With the help of our CF nurse Nicky, I hope this helps people understand the hidden disability that is Cystic Fibrosis.

River is a beautiful, absolutely perfectly normal little girl, who loves life and does everything a two-year-old does, with other children.

The first two sentences are ones that I still haven’t accepted I doubt that I ever will.

Our daughter River was born with Cystic Fibrosis (CF), a life limiting, progressive illness which affects multiple organs. There is currently no cure. River nor us as parents have control over the progression of her illness but do what we can to try to keep her as well as possible and slow down the progression of the disease.

CF mainly affects River’s lungs and digestive system. Her body produces thick, sticky secretions in her lungs which predisposes her to acute and chronic lung infections which can lead to irreversible lung damage. Even when she is well, we need to perform physiotherapy twice a day to try to keep her lungs clear of secretions in order to prevent these infections. She also takes a preventative antibiotic twice a day.

River’s treatments are time consuming and we also spend time cleaning and disinfecting the nebuliser equipment every day.

River is pancreatic insufficient. She does not produce the enzymes needed to breakdown the fat content of food, putting her at risk of being underweight and vitamin deficient. River therefore requires a closely monitored diet with daily vitamin supplements. Every time River eats or drinks anything containing fat, she must be given an enzyme supplement called Creon. We work out the dose based on the fat content of her meal. It is not an exact science and incorrect dosing can lead to abdominal pain and either constipation or loose, fatty stools.

Since her diagnosis via newborn screening, River has been under the care of the paediatric CF team at Buckinghamshire Healthcare. As a CF team they monitor River every month at our CF clinic at Wycombe Hospital. Once a year she is required to attend the specialist CF centre in Oxford (The John Radcliffe) for an annual review. If she is unwell in between clinics, she has open door access to their inpatient wards at Wycombe and Stoke Mandeville. When she becomes unwell with a cough or chest infection, a cough swab should be arranged and she will commence a two week course of oral antibiotics. If she does not improve this will be followed by another two-week course and a two-week inpatient stay for intravenous antibiotics if required.

Living with CF has a huge impact on River and us as a family. The treatment burden is high and we try to share the load.

I hope this has given you a good insight into River’s condition, healthcare needs and the subsequent impact on her and our family’s life.

Tim"

Please help us to support this incredible charity.