Some believe that those who share the same rare disease can be treated the same, but that isn’t the case. What works for one doesn’t work for everyone.~Angie G.
When someone is ill, when they lose the ability to work or care for themselves or for their families, when costs of keeping a loved one alive bankrupt them, when people die prematurely – weContinue reading
These people that are pitied or being asked to suffer in silence don’t want to suffer, don’t see themselves as pitiable, don’t see themselves as victims – see themselves as citizens, participants in the process,Continue reading
When people say, “I hope she gets better” or “I hope she gets healed”, I know it’s very well-meaning, but when you have a genetic disorder, every cell in your body contains your mutation, soContinue reading
I wish others could try to understand that each and every holiday, we sit and wonder if this will be the last one we’re able to share with our child. Or the stress of beingContinue reading
There’s a remarkable amount of strength residing in those who move forward without being able to physically move. Ones that carry the weight of illness or a disability, they mattle wars most know nothing about.Continue reading