The trust was established in 1992 following the death of Julie Kent from Cystic Fibrosis aged 13. Julie’s savings provided the initial funds. The aim of the Trust is to provide financial help to those affected by Cystic Fibrosis living in the North East of England.
Cystic Fibrosis (CF) is the most common inherited disease in the UK and there are approximately 7,000 people with the disease in the UK. It is a chronic, progressive life-threatening disease for which there is at present no cure. Life expectancy is significantly compromised and the average is now approximately 30 years of age.
People with CF have to follow a strict daily schedule of treatment aimed at keeping them as well as possible and preventing lung disease. They are often on permanent antibiotics, vitamin supplements and food enzymes. As the disease progresses most will require intravenous antibotics every two months, administered in hospital and at home. Eventually they will require feeding by a gastrostomy (a tube directly into the stomach) and sometimes they will require oxygen at home. Thus, CF has a great impact not just on the person themselves, but on the whole family.
The Julie Kent Trust tries to help in a number of ways:
- Most of the money is given out as grants to help with the cost of hospital admissions e.g. travel costs, extra tempting food for the children and helping families who have to buy extra meals.
- Special treats such as a cinema visit when a child is in hospital for over two weeks. Also parents often have to take time off work sometimes unpaid or forego overtime.
- Small grants towards the cost of holidays to give children, young people and families a break.
- Special situations which can be very diverse, ranging from providing a washing machine or telephone. On one occasion the mother of a child with CF gave up work to care for her terminally ill husband but this coincided with a strike by the DSS and it was the Julie Kent Trust which provided the money for food, gas and electricity for several weeks.
The Trustees are all volunteers and absorb all costs, e.g. postage, stationery, telephone calls etc. All the money raised comes from donations, sponsored events and fund raising initiatives. Many of the families who have been helped through the years do come back and help with fundraising.