Show Your Support For Rare Disease Day

Rare Disease Day is this Wednesday, February 29th. I want to invite all of you to wear jeans/denim/blue on Wednesday in honor of Abby and all of the others living with a rare disease.

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!

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Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS. If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan. The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google. My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!! (a combination of all 3 is great too!) :) Notice that it's not to get famous and it never wi

Bath Time Photos!!

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Imagination Movers Photo Recap

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Life as a Leach

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