Life as a Leach

Matt and I were amazed and humbled at the number of people who took the time to support our family by sending in their "blue" pictures.  There were many others who wrote Facebook posts to show support as well.  As I said in my Facebook post yesterday, the thing I love about Rare Disease Day is that for once, you're not alone. When YOU are the expert teaching the doctors about your daughter's syndrome all of the time, it can be draining. With only 9 other kids in the world with the same syndrome, there's not lot of opportunity to band together. But on February 28th, all of the families living with a rare disease can join together and show how strong they really are! Thank you, thank you, thank you  for loving on our family in this way!  The kids loved seeing all of the pictures!  Here's the recap: Family members showed us how much they love Abby... Does Anna look up to something, or what?! We had schools wearing their blue... ...

In August, an article that I wrote about Abby for The Global Genes Project was published.  Until I introduced Global Genes to Cerebrocostomandibular Syndrome, it wasn't even listed in the rare disease data base.  The editor emailed me recently asking me to write an update about Abby, so I happily obliged!  I love sharing the miracles!   Look at all the fun stuff I got in the mail the other day as a thank you gift! Hats, bracelets, car magnets, stickers, pins, key chains, and even a bear for Abby!  Everything spreads the message that We Care About Rare!   I'll be sporting my new key chain and bracelet, and I am thrilled with the new car magnet to replace to sticker I had to say goodbye to after my accident.  We're going to put away some of the other stuff to hand out for Rare Disease Day on February 28th.  We have plenty of stickers, so I'm thinking about maybe passing them out to Abby's class or something.  I may even do a little ...