In January of this year Cystic Fibrosis Disease hit our own doorstep when our 3 week old Koa was diagnosed from his heel prick test. To say it was a shock was an understatement- since then we have learnt a massive 1 in 20 people carry the faulty CF gene unaware.

It has been a worrying and challenging year for our family as we navigate this new normal for us and encorporate all Koas daily medications and physios needed daily to keep him well.

Cystic fibrosis is a life shortening progressive disease that affects the lungs and digestive system-the salt channels do not work correctly to move water/salt throughout his body- therefore causing thick sticky mucus to build become blocked and cause infections, affecting airways and breathing . Another main characteristic of CF is the pancreas not functioning therefore the body cannot absorb the nutrients from food or digest it.

Treatments for Koa are daily and multiple times, no days off and this will be the case for life .

Physio sessions up to 3 times a day can include PEP breathing device, Chest therapy & nebulisers. Medications for CF include digestive enzymes to digest any food and up 20-40capsules a day. Antibiotics & the biggest one is Modulators.

CF treatment has come a long way in the last decade and thanks to fundraising going into CF, research has led to amazing modulator medications which gives the likes of our wee Koa with CF the chance at a healthier longer life. Which is all any parent dreams of, healthy happy children.

On Saturday the 23rd of November I (Marc)plan on taking on the challenge of 10 hyrox races in 24 hours with the help of friends and family along the way . All proceeds will go to the Cystic Fibrosis trust to help with much needed research and medicines .

This event will take place from St Mary’s Park Beragh home of Beragh Red Knights GFC . Any donation at all can make a big difference and we’re incredibly grateful for it .

I will keep updates going on socials with information around the day and the event itself and information on CF , modular drugs, physio etc .

Thanks

Zoe & Marc Boyle