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On Friday the 16th of June the Clari Cares team is asking you all to take part in one HUGE dish assist.
Of course, our beautiful dish assist emblem comes in a sunny yellow colour - and on the 16th of June we’d like you all to wear yellow in honour of Wear Yellow Day - a day when the cystic fibrosis community wears yellow to raise awareness and money for an important cause.
Some of you may know that one of our own Clarians has a son with cystic fibrosis. Nicole’s son Arlo was diagnosed with CF at just under 4 weeks old and you can read below to find out more about their families journey with CF.
All I am asking you to do is wear something yellow on Friday, the 16th of June, and post a photo on a social network of your choice using the #wearyellowday and #yelfie. If you're feeling extra generous and wonderful then please donate to our campaign in BrightFunds - even $1 will make a difference and will be matched by Clari.
Nicole and Arlo’s story:
Cystic fibrosis (CF) is a progressive genetic condition that affects the lungs, pancreas and other organs throughout the body. There are just over 100,000 people with CF across the globe.
In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, mucus in various organs becomes thick and sticky. This has a significant impact on the functionality of the lungs and the pancreas as well as other organs like the liver.
As of today, there is no cure for cystic fibrosis - and whilst significant developments in drug therapies mean that there are many reasons to be optimistic, the condition still requires those affected by it to take daily medications and to adhere to a burdensome treatment schedule — and not everyone with CF is eligible for the drug therapies available that improve quality and length of life.
Arlo was diagnosed with cystic fibrosis at just under 4 weeks old as it was detected on one of his routine blood tests. We were immediately plunged into a routine of daily medication, physio, and other treatments to keep Arlo healthy. As a family we juggle hospital appointments (at least every 6 weeks), pharmacy trips, and much more - including becoming experts in giving medications, administering IV antibiotics, doing physio, and acting as Arlo's nurse and dietician.
Since 4 weeks old, Arlo has done at least 30 minutes of physio a day - and he currently does around an hour or more of treatments every day before and after he attends nursery. He takes daily prophylactic antibiotics, fat soluble vitamin supplements, and must take a digestive enzyme before he eats anything with fat or protein in it. If Arlo is unwell, there will be additional treatments and medications added to this daily routine.
It’s not all about CF though - Arlo is a bundle of energy and embraces everything toddler life has to offer. He loves anything transport related and enjoys reading - and ‘going on adventures’ (and he puts it!). He plays football and spends lots of time on the trampoline - which acts as added physio! This is all thanks to the work of the CF Trust and the CF Foundation.
The CF Trust and the CF Foundation are fighting for a brighter future for people with CF, and their families, by funding cutting-edge research, driving up standards of care, and supporting people with the condition and their loved ones every step of the way.