People often think having a rare disease or caring for someone who is rare means a life filled with sadness and difficulty. They often wonder “how we do it.” They sometimes feel pity for us. And these questions and emotions speak to how our society can view sickness and disability – a problem or a burden to be “fixed.”

Of course, we all would love cures and treatments for everyone facing rare disease. But there are so many of us who wouldn’t change who we are or who our kids are for the world. While we hope for a brighter future with better health, we also appreciate what we have now.

What many don’t see or don’t realize is the amount of joy, happiness and love we experience as well.

We are grateful for the small things.

Click the link to catch a glimpse of the rare disease life!