The story of ananda
As rare disease day approaches I can’t help but share a few thoughts and feelings behind all that comes with being a mother of a child with a rare disease…. When Isla was first diagnosed we felt like that was the worst day of our lives and to this day it still was and is, but it’s all the hits and heartache after you recieve news like this that adds to the torture in that moment, the constant loss that your child goes through, the pain they feel and you can’t take away, the confusion, the mind fog, we feel all of it with them, all the broken promises from health professionals, all the what ifs, all the what will be, both for us as parents and her as our daughter, the hope your given is ripped away nearly as soon as your given it, I would give anything to have hope again, anything to try, any type of treatment to help her in some way, shape or form! Just anything, not living in a world with hope for your child and their future changes your whole view on the world and what we thought would be!I had a conversation the other day that just cemented the brutal nature and reality of all that comes with rare disease…. Not enough people care, no one ever seems to understand the gravity behind the daily struggles, our life revolves around fighting for her rights for comfort and a meaningful life, we constantly come second/thrid to well known diseases and illnesses. It shouldn’t be this way, all kids should matter, and be important, but this just isn’t the case! I had an appointment with an RCH physio who literally sat there and told me I wouldn’t be able to access a cough assist machine because their only given to children with cystic fibrosis who have no muscle tone, I looked at her with a puzzled face because what she was describing was the exact same as Isla and the exact prognosis of how Isla’s lungs would fail her