My friend Lindsay made this badge for Landon. Feel free to steal it and use it, but please just give her the credit for it. I am so stinkin' excited about it. It's the mito ribbon and then of course the VLCADD part is Landon's disorder. I really hope to spread it around and to hopefully be able to use it to spread awareness for Landon and other's with VLCADD and Mito. Thanks Again Lindsay, you rock!
That's awesome! I have a VLCADD/mito resource page on my blog. I linked to your blog a while ago (let me know if that's okay - let me know if you'd like me to remove it). I hope you check it out & share the link.
ReplyDeletehttp://reallywhatwerewethinking.blogspot.com/p/vlcadd.html
Dana-that's awesome that you linked us, I love it. However we can get the word out and spread awareness is what I am willing to do!!
ReplyDeleteYour blog was the ONLY blog I found with VLCADD after Klaw was diagnosed. Trust me - it was very helpful to see a happy, healthy toddler with VLCADD as opposed to all the terrible stories I was reading in the clinical journals.
ReplyDeleteDana-that's why I started it. There was NOTHING out there but horror stories about how my son was going to die, etc. when we were going through the nb screen, skin biopsy, diagnosis path with Landon. It scared me to death, so I wanted people to know that there were people living 'normal' lives out there with the disorder. Granite Landon's the only one with his mutation of the disorder, but we make it and are happy and live wonderful prductive lives! I'm so glad we were able to help you!
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