It can be extremely isolating when you are a family dealing with a rare disease. As much as people want to understand, they just can't. Starting Rare Love has allowed me to connect with others who share similar feelings, but battle different diseases. Likewise, participating in events like Rare Disease Day helps to raise awareness and feel just a little less isolated.
Watch this short video about Rare Disease Day and please consider joining me on Wednesday! :)
PS: It's considered a "rare" disease if it affects less than 1 in 2000 people. That really puts into perspective just how rare CCMS is...I don't think they can even say "1 in ____." 1 in 1 billion? All I know is that it is extra rare, and we are extra thankful for her life!