I feel like I've scoured the internet and tapped out all of my sources at the children's hospital here. I've only found 2 other families dealing with a diagnosis of Creatine Transporter Deficiency, one of whom blogs at slc6a8.blogspot.com.
Is there anyone else out there? I'm told there are 150 diagnosed cases worldwide (but likely more) and I'm hoping others have taken to the internet to find support. If so, please email me at crtr.boy@gmail.com
It's a lonely ride and I'm trying to be brave for my kid but, truthfully, I've no idea what lies around the corner and I'm scared. I just don't want to screw up, you know? I want to do everything humanly possible to help him and then some.
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