Schizencephaly Awareness WeAreRare.org

Since Noah's broken femur it seems we've just seen issue after issue arise. His neck is always tight and he has been prescribed diazapam for pain. His hip is completely out of socket bow making his pan levels high and sadly the only choice I see for him now is surgery. It is so scary since I have to compromise yet another time and subject him to go under,this time more than four hours. My biggest fear being of course his body is not strong enough to make it through surgery and more than that heal and get better quickly. No one can calm my next crazy as it seems I am in one endless panic attack until this happens. I lay awake and find myself pleading with the fear  to just give him more time in this world. I hate the fact he has been under so much and just when I think It's over a bigger surgery is around the corner. I absolutely hate this disorder. I hate every part of it. From day one worrying about what the future will hold and now today worrying about how much he has...

Shea Page says "  After my daughter Stellan was diagnosed with Schizencephaly, I wanted to help spread the word about the rare brain disorder. I began designing and making these heart shaped MRI image to help raise awareness. All proceeds will go directly to helping my daughter to get all the help and therapy she needs. Thank you for the support!" Selling customized Schizencephaly Awareness necklaces and key chains for $15! Send me a message with the MRI image you want me to use to custom make your order! All necklaces come in either black, green or purple ribbon, or a combination of! Looking forward to having you all wear these to help raise and spread awareness of such a rare disorder! https://www.facebook.com/GreyMattersSchizencephalyAwareness

We got to meet another Schizencephaly family last week at Disney downtown.  These two kids were full of giggles and super shy

Words cannot describe this . I am just one proud mama