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 will be. I'd much rather live a boring life...but God prefers to make it interesting. :) So if this is the life God has given us, then we want to live it in a way that points others toward Christ and encourages others with our story.
Where am I going with this? I feel like I'm rambling. Oh yeah, back to the article. It's an interesting read and I certainly feel a strong connection to this family...after all, there are only 6 kids in the world with the syndrome! I'm glad that the word is being spread about CCMS. Check out the article if you haven't already and feel free to share your thoughts with me via email!
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 will be. I'd much rather live a boring life...but God prefers to make it interesting. :) So if this is the life God has given us, then we want to live it in a way that points others toward Christ and encourages others with our story.
Where am I going with this? I feel like I'm rambling. Oh yeah, back to the article. It's an interesting read and I certainly feel a strong connection to this family...after all, there are only 6 kids in the world with the syndrome! I'm glad that the word is being spread about CCMS. Check out the article if you haven't already and feel free to share your thoughts with me via email!
Comments
http://www.reagansblob.com/2011/07/summertime/#comments
Do you see any mention of wanting to spend time with Piper? Just saying...
Jamie T.
God Bless Piper, Abigail and their families.
Do you know that if you google the Reader's Digest article, this is one of the first links that comes up, and your comments are out there for the world to read--including the people who you are writing negative things about?
It would break my heart if on top of such a challenging life situation, I knew strangers were out there writing mean things (thinly veiled as compliments to a different family) in such a public forum.
I wish the best for Abby and Piper, and I think blogs like this do a GREAT job of making connections and developing relationships around a rare medical condition. Let's keep it supportive for everyone and remember the internet is a public place.
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