Today is World Rare Disease Day. CHARGE syndrome is on that list.
I hadn’t heard of it before our diagnosis, like almost every one else. It’s scary to be told your child has something no one even knows the name of. It gives you a feeling of being alone that I can’t explain. That is until you find your people. The other people in world who “get it”. And there are a lot of “us”.
There are over 7000 distinct types of rare diseases and syndromes, and more are constantly being discovered.
There are more people impacted by rare disease than Cancer and AIDS combined and 95% do not have an approved drug treatment.
I won’t bore you with more facts, but those give you a small glimpse.
Awareness needs to be raised about Noah and all the other children and adults who are diagnosed with something rare so they won’t feel so isolated and alone in this big ol’ world. A little education, understanding, and acceptance go along way. Awareness is the first step in that process.
My biggest fear is that Noah will feel alone and on the outside and isolated, even bullied, because he was born with a syndrome. It’s every parents fear that their child won’t be loved and accepted for who they are. It’s a very real fear for me and my family. It’s heartbreaking to think of, but if education and awareness can change one persons mind and actions, it’s a success. It’s a step in the right direction.
So today think of Noah and any one else you know with a rare syndrome or disease, and tell the world all about their awesomeness. Spread the word.