Family fun day to raise awareness of cystic fibrosis
The results of a simple heel prick test turned the world upside down for proud parents Keith and Tracey Savage.
Their baby boy’s diagnosis of cystic fibrosis opened their eyes to facts they never knew about the genetic condition.
Now, they want to use their experience to raise awareness and have organised a one-off large fundraising weekend for the Cystic Fibrosis Trust at Middleton Sports Club, where Keith is the tennis coach.
There will be a family fun day on Saturday, September 17, from 1pm to 5pm, with free admission.
In the build up, Keith and Paul McDonald are playing a 24-hour racket marathon, taking on two new challengers every hour at tennis and racket ball, starting on Friday, September 16.
Alongside this, brave junior players will be attempting their own mini-marathon to help the family reach their £2,000 target.
Nine-month-old Freddie was born at Christmas and was diagnosed shortly afterwards.
Tracey said: “Our son was diagnosed with cystic fibrosis from his heel prick test.
“We had no idea that we both carried this faulty gene, having already had one child, who we now know is free of this condition and also fortunately not a carrier, and have since seen advertised the tests that can provide you with such information.
“After Freddie’s heel prick test diagnosis, we had to go through a nerve-racking sweat test, not what you want to be waiting on when you have just gone through the joy of bringing your son into the world and let’s face it who doesn’t say that they wish for a healthy baby.”
Since Freddie’s diagnosis it has been a steep learning journey for the family, starting with a two-day course at the Royal Brompton Hospital in London for training on how to give medication and physiotherapy.
“Being that Freddie is a baby, his morning routine takes two hours to ensure that all is given correctly,” explained Tracey.
“Further time is spent throughout the day repeating some of these and administering more medicines. His physio is given through one of us bouncing him, on our lap, up and down on a ball, while holding a device called a PEP over his mouth and nose, which is designed to create a resistance against his breath so that air can be pushed around all of his lungs.
“Now that Freddie is getting stronger, he can put up a fight against having the PEP on his face so to battle with the fact that we know it is good for him but that he is not liking it can be very tough.”
Cystic fibrosis causes a thick sticky mucus which can result in frequent respiratory infections, progressive lung damage and digestive problems. Each week, five babies are born with cystic fibrosis and two people die. There is currently no cure but many treatments are available to manage it, like physiotherapy, medication and nutrition.
There are 10,500 people in the UK who have cystic fibrosis, an hereditary life-limiting condition, with one in 25 people carrying the faulty gene that causes it.
Tracey said: “We don’t want cystic fibrosis to rule our lives. We have therefore taken it upon ourselves to help raise money for the Cystic Fibrosis Trust, who are funding cutting-edge research, by organising the family fun day.”
The fun day at Middleton Sports Club, in Sea Lane, Bognor Regis, will include activity stalls, crafts, bouncy castle, soft play, barbecue, evening band and disco. Visit www.freddiesfundraiser.com for more information.
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