But little good that did us...there wasn't much to find. There was a lot of technical information, research studies, etc. It was scary. Over time I found support groups, awesome blogs and the information I needed to deal with this. We were lucky, soooo lucky, to have a competent and knowledgeable neurologist who not only knew about PMG but knew what we needed to do before and after Luke was born and who is very aggressive in treating Luke. That is NOT the case for a lot of people. The more people I talk to, the more impressed I am with the care we have received. A lot of kids aren't diagnosed until they are toddlers. A lot of neurologists and doctors aren't pushing therapy early - saying that they're too little to start therapy. A lot of therapists, doctors, neurologists, even, aren't terribly familiar with PMG, how it presents itself and how to go about 'treating' it.
Through this blog I have met a lot of amazing people. My friend, Catrina, is a grandmother to Brie who was diagnosed at 3 weeks. She and her daughter, Brandy, had a hard time getting Brie diagnosed because the doctors at the hospital they were at were not even sure how to read the MRI! So Catrina got fired up! Long story short - she and her daughter decided that PMG needed it's very own foundation. It's very own organization. It's very own place to showcase our PMG kiddos, compile PMG information and much more. Really, a place where when someone hears those words that Dan and I heard two years ago, they have a place that they can see hope, happiness, support and love.
And PMGAwareness.org is born...It's still new. And it is so exciting. I keep thinking what it would have meant to us to have this that day just over two years ago when Luke was diagnosed. I don't think it could have made PMG less scary but it would have made it easier.
Check it out. Please. I really believe that PMG is under diagnosed. If awareness is raised maybe more kids can get the early intervention we were privy to due to a knowledgeable team behind us. The more 'traffic' the site gets, the easier it will be for other people to find it when they search PMG. Thanks!
Of course, I must leave you with a picture....Happy boy in the bathtub dunking his head!! Love to you all!
