Thursday, November 5, 2009
I will eventually update more
But not right now! I need to get it all thought out and get all the info straight in my head. It's a lot to take it. We are back at LGH though, which makes it much more comfortable to deal with. But it's still ot home and it'll still be a LOT to go through!! Anyway, I should have more info up here within the next day or two.
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HI Cindy. My name is Misty - I am Haven's mother. She was diagnosed with ROHHAD Syndrome in early 2008. She also has the rarity of having the Ganglioneuroblastoma Cancer with it - if you see the articles from France about ROHHADNET. We are currently at Johns Hopkins hospital and Haven is the first to go under treatment for ROHHAD - which I'm sure you know there is no treatment or cure YET! She has been testing different medications and this last year has been amazing at the results we've seen. Thank you for signing up on my site on Facebook. I also run ROHHAD.net and haveyroo.blogspot.com -- you can email me anytime at haveyroo@gmail.com
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