EVERY four days a child in Australia is born with cystic fibrosis – and 13-year-old Dermot Ritchie is one of them.
Not that the Echuca teen is letting that define him in any way.
Medical treatment and physiotherapy have, for Dermot, been as routine a part of his life as getting out of bed every day.
But he is still your typical teenager in every other aspect – he loves sport, especially tennis and football.
His family participates in the Royal Children’s Hospital Run for the Kids fun run and Dermot has twice completed the 15km.
This determined youngster is as independent as he possibly can be.
Or, in his words: “I am not going to let any of that stop me”.
He loves playing football for the Murray Bombers.
“I started in year 5 as a bottom ager in the Under 12s and I feel like all the other kids out there on the ground,” Dermot said.
And that is something his parents Julie and Nick have always encouraged.
“We never wanted CF to limit Dermot’s life, we have always wanted him to be able to go out and do all the things he wants to,” Julie said.
“We want him to be able to enjoy school camps and sleepovers which is why we have encouraged his independence from such an early age,” Nick said.
Cystic fibrosis causes abnormal levels of excessively thick and sticky mucus to develop within the lungs, airways and digestive system. This causes impairment of digestive functions of the pancreas and traps bacteria in the lungs resulting in recurrent infections and leading to irreversible damage.
“It is an unpredictable genetic disease but Dermot has accepted the things he has to do every day – it is part of his life and his daily routine
“He knows he has to use a nebuliser morning and night to loosen the mucus, he knows he has to take tablets every single day and he has been doing his own physiotherapy for quite a few years now,” Julie said.
He also knows by the change in his cough if it’s time to take antibiotics.
Both Julie and Nick agree the biggest part of the day-to-day struggle is ensuring Dermot is putting on weight and maintaining growth.
“This is a common problem with cystic fibrosis and it is closely monitored,” she said.
In addition to Dermot having a well-balanced diet, he also needs a high energy and fat diet with plenty of oil and butter to increase the fat content, along with the addition of medical nutritional supplements daily.
“Dermot at times takes tablets to stimulate his appetite. Keeping on weight is very important for fighting off lung infections and also puts him in a lot better position should he have to recover from an infection,” Julie said.
She added the high calorie intake is required because of the artificial enzymes not being able to 100 per cent do the same job as those we naturally produce and because of the increased energy used by the lungs when coughing and fighting infection.
Hospital stays come with the territory of CF but Dermot has been in pretty good health and his last admission was two years ago.
The Ritchie family was extremely grateful for advances that have allowed some of the care to be done from the comfort of their home or the Echuca hospital.
“Through Telehealth we can talk to Dermot’s whole medical team online with regular appointments.
“The district nurse has liaised with the Children’s Hospital at times, which has been a fantastic support as well.”
Both Julie and Nick describe life with CF as a ‘bit of a journey’.
“Dermot was just 19 days old when diagnosed. He was described as failing to thrive and the paediatrician was onto it straight away.
“It did come to us as a bit of a shock as we had no family history but it has just been one of those things. It was a whirlwind in those early days as we had to be educated and taught how to care for him,” Julie said.
The couple said there have been long periods of time where the family were separated, but they have always managed to get through with the help of family, friends and the CF support networks.
They have been avid supporters of the Breathe Easy Foundation (instigated by Echuca’s Shari Butcher) and are urging everyone in the community to jump on board and support their events, including the Breathe Easy Cocktail Party on Saturday September 8.
“This town is phenomenal in what it does and who it supports. Attending something like the Breathe Easy Cocktail Party contributes to research to find a cure,” Julie said.
“It helps support families caring for children with CF and also helps those children as they transition into adulthood.
“We are seeing the returns in the better outcomes for those living with CF from these funds raised firsthand.”