01/03/2026
Rare Disease Day 2026 ✨️💛
For us its a special Day because it gives us a chance to talk about Cystic Fibrosis and spread awareness 💛
Cystic Fibrosis has been one of the most eye opening things that i have ever come accross , it came with uncertanity, fear, tears & always the unknown and what ifs... but with all this it has also came with Strength, knowledge and a fight which we never back down & will Always Win!!
We have good days & we have bad days! Numerous Nebs, Physio Sessions, unlimited medication, Clinic, Admissions, being a unqualified nurse and a whole lot of Love 💛💛💛
Shout out to all the wee ones who fight day in day out and never give up , but also a shout out to all the Parents who stand by their wee ones side also never giving up , advocating, fighting, being not only a parent but a 24/7 Nurse!
Robyn hasnt had it easy from birth but we are getting there every day, were we are now is not what i thought was possible last year! We are always improving even with little knocks along the way. For that im thankful.
We have the best support near & far and with every share, like, comment, donation, attending fundraisers, check ins etc it helps us spread awareness and get the word out ! Its all appericated ❤️❤️❤️
Also if anyone has CF Or a parent of CF child your not alone, the road can be hard and can seem long but i promise it does get easier - my inbox is always open 💛💛 Laya Barr
