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“I live for the moment when a cure for my daughter’s condition is found,” says Josette Falzon, who recently completed the 42-kilometre London Marathon to raise funds for research on cystic fibrosis.
“Seeing my daughter Francesca during the London Marathon motivated me to run further. The atmosphere was cheerful and it felt amazing to run with other charities and to hear my name being called out… reaching the finishing line after a five-and-a-half-hour run was an exhilarating experience.”
It was when Francesca was five years old that Josette began running to raise funds for research and she has since collected £130,000, which makes her the top fundraiser for The UK Cystic Fibrosis Trust Fund.
“I work hard to stay positive because when I look ahead to the future I have real hope that a cure will be found.”
Eleven-year-old Francesca was diagnosed with cystic fibrosis when she was just four months old. Initially doctors thought that she was a small baby but Josette wasn’t convinced.
“Francesca had a terrible cough and didn’t seem to be gaining weight; when later on a doctor diagnosed her with cystic fibrosis I felt relieved because I thought the condition could be treated with antibiotics. It was only after I did some research that reality kicked in; I cried when I read the prognosis and the treatment that my baby would have to endure.”
The condition, which is genetically inherited, affects the digestive system and the lungs, resulting in a shorter than average lifespan. Dr Ruth Farrugia, who coordinated the CF clinic during Francesca’s early years, explains that in Europe one in every 25 individuals carries the CF gene.
“During conception, if both parents carry the gene there is a 25 per cent chance that the child will suffer from the condition.” In some countries a new neonatal CF gene screening programme provides early diagnosis, recognition of problems associated with the condition and early institution of therapy, which slows the deterioration. According to Dr Patrick Sammut from the CF clinic, there are no known plans to introduce this screening programme locally.
Patients with cystic fibrosis produce large quantities of mucus that clog the respiratory system; daily physiotherapy helps to prevent this mucus from settling and blocking the airways. However the damage to the lungs remains irreversible. Cystic fibrosis also affects the pancreatic area that absorbs fat and other nutrients so supplements need to be taken to aid digestion. The damage done to internal organs during childhood remains invisible and children can look healthy; however as the disease progresses in early adulthood symptoms tend to become more severe and complicated.
Antibiotics are also used frequently to prevent infection when children are unwell and other precautions need to be taken, causing further anxiety to parents. “The days following Francesca’s diagnosis were hard because I felt the pressure to care for my baby in the best possible way.” A few months later, Francesca was flown to the Royal Brompton Hospital in England for a consultation where treatment for CF was prescribed.
Every morning and before bedtime, Josette performs physiotherapy on her daughter who then goes on to use a nebuliser to help clear her lungs.
“I never hide anything from her; she knows that taking her pills at home and at school helps her to keep well. Luckily her friends are supportive and remind her to take her tablets every time she eats.”
Contrary to popular belief exercise is very beneficial for CF children – Francesca does ballet and leads an active lifestyle – she even went on to run the last 500 metres of the London Marathon with her mother. Piano playing, drama and keeping up-to-date with fashion are also some of Francesca’s pastimes.
“I try to keep our life as normal as possible. In winter we go for picnics with friends and in summer we swim daily… so far life has been good and for this I am thankful.”
The Cystic Fibrosis Trust Fund in the UK is dedicated towards gene therapy, where a replacement gene would reverse the damage caused by CF. Even though it could be years before a cure is found, ongoing research for treatment that prolongs life further gives patients a better chance to benefit from a cure when it is found. That is why it is essential to raise funds continuously.
Josette started fundraising when a young CF patient she had befriended passed away. “Edward was my inspiration because he encouraged me to run and raise funds.” When Josette raced for the first time in the 2006 Malta half-marathon there was little awareness about CF but, since then, she has formed an excellent support network.
“Before this year’s Malta half-marathon I put up a Facebook status asking people to join me and within minutes I got over 200 replies. During the race it felt amazing to look behind me and see a trail of yellow t-shirts.”
Josette, together with Douglas Barbaro Sant and Mark Pace, also organises events to raise funds for the cause. Various schools also organise a yearlydress-down day and funds collected also go for CF research.
“Many people do their bit to help… throughout this experience Francesca and I have never felt alone.”
Presently the CF clinic is run by Dr Patrick Sammut and hosts a team of British specialists who come to Malta every six months to assess the progress of the eight CF cases that have been diagnosed over the last 14 years. In between visits patients are followed by paediatricians and respiratory specialists. The incidence of CF in Malta is on average of 1.2 newly diagnosed cases per year; however these figures are indefinite because of cases that remain undiagnosed until a later stage.
How does Josette feel when the British CF team visit Malta and Francesca undergoes a battery of tests? “I feel anxious and I pray wholeheartedly that doctors will find her well because I have no other wish than to see her healthy.”
Locally there is no support group for parents of CF children but for Josette this was never an issue. “My family and friends have always supported me through this journey and this has helped me to stay focused and to do my part.”
39-year-old Josette – who looks really athletic – tells me that she was never into sport.
“I only began running to raise funds that will help find a cure for my daughter and other CF kids.” Treatments for the condition have improved dramatically in the past few years. “The generosity of those who support the cause keeps me going and fuels my hope… when Francesca asks about the future I tell her to have faith – luckily she is young and hopefully a cure will be found on time. Until then I will keep on running.”
Donations can be made to HSBC (Malta) account number 075105155050 or BOV (Malta) account number 40014566804.
Sourced from the Cystic Fibrosis Trust UK