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.
From your child with special needs:“If I had words I would tell you about my heart light. It is strong and pure, full of unconditional love. This physical body of mine lets me down andContinue reading
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