|All the crochet I made|
Every year, I try to post something about it on social media, but every passing year I feel like people, even those closer to me, care less about it, so this year I thought about doing something a little different, and with a bit more involvement.
There are hundreds of rare diseases out there, and with each afflicting only a small percentage it is no wonder that they are often ignored and passed by. However, it is a cause that I feel very close to me, as my sister has one all of her own, and ignorance about it is extremely wide spread.
My sister, that little demon in a girl’s body (I love her dearly though, we just like to fight a lot), is 12 and has PCD - Primary Ciliary Dyskinesia; a disease that affects something like 1 in 20000 people. In a nut shell it means she has a reduced number of cilia in her body, in her case none in her lungs, a few strained ones in her nose, and possibly some not working ones in her ears, but the ones in her eyes seem fine, for now. Cilia help retain all dirt and infections and then expel them from the body, if you have a limited number of them, or none, it means your body is more prone to all sort of infections. Due to the fact that the ones in her ears don’t work properly, she is also partially deaf and needs to wear hearing aids. Despite all of this she lives as normal a life as possible.
Here is a photo of me trying to help her up a ladder, and her not looking impressed at the help - story of our lives.
Anyway, back to the main topic. Not everyone is as lucky as my sister, some people cannot even think about leaving their homes without help and support, some people cannot even live at home without help and support, and for some people it’s incredibly dangerous to leave their homes due to the health risks of mingling with other people. Lucky there are plenty of associations out there who try their best at helping and providing a helping hand, no matter what the situation requires, and this year I want to do my part in helping them.
There is a non-profit organisation in Italy, in the town where my family is, who does just that, they help make life as easy as possible for people with rare diseases, no matter what type of help they need. They are just a small institution, created by a father who lost his daughter, Azzurra, to a rare disease, and who decided he was going to try and make a difference. This organisation is called Azzurra Associzaione Malattie Rare Onlus, and it is based in Trieste, Italy.
My involvement this year will consist on donating 10% of the sale price of any of item sold through my Etsy shop [www.etsy.com/shop/ThreadingOnR…], even those sold using the first time buyer discount link [etsy.me/1DAl5Ds] to this wonderful association.
Azzurra’s Links are here if you want to find out more, although I’m afraid they are all in Italian, but I will be happy to provide a translation for it if you need it.
Thank you all for your help and support!