Schizencephaly Awareness WeAreRare.org

Families if you are interested in taking part of this worldwide campaign please add me and I will get you into the group and help you get involved. This will require a lot of work but we know it will be a huge success. Schizencephaly Families we're going to attempt a monumental feat. And we need every family in every state to help with this coming years awareness day. We want to include every fam ily possible this year without them having to travel out of state. For next years Schiz awareness day we're going to going worldwide!!! We want to include any family that wants to participate... yes even those NOT in the USA!! Here is the 'general' idea. Every family that wants to participate should be on the schiz awareness map. Email Lori Barrett   schizawarenessmap@gmail.com or send her a message on FB to get added. If you're already on the map make sure you let us know you want to participate. The 'plan' ... two flags, one goal, raise awareness!! Two flags will...

to all families struggling with this disorder. I want you to know there is a huge network waiting for you. and with us all together, you will never walk alone.

This story won 2nd place in a short story contest for the Orlando sentinel and wesh 2 news out of over 5000 entries in 2002. I just found it tucked in my grandma's things and thought I would share.   I wake up to the crisp summer sunlight peeking through the window and the birds singing good morning. Noah is snuggled up next to me and as I look down a big smile spreads across his face as he twists my hair in his two fingers. "what do you want to do today little man?" Noah smiles and leaps out of bed he runs to the kitchen and pulls open the doors pointing to fresh fruit on the top shelf. I pick him up and help him reach it as he takes a sweet plum and puts it up to his mouth and says "delicious."  After breakfast he places his hand on my shoulder and yells "you're it!', as he bolts out the door. I stand there watching as he finds a yellow butterfly shooting by and he begins chasing all around the garden. Finally I run up to him whisk him int...

yes he does!

 In the past 5 years there has been one thing that has changed in my life more than any other. Finding other families on Facebook has been such a blessing in many ways and it has also brought me closer to the idea that none of us are safe in this world from the hurts that come along with disorders. I had never thought much about Noah ever leaving this world. I suppose initially when he was born and the Dr's reminded me daily he was on "borrowed time" It was a reality but at that stage he was doing so much better than I ever imagined I guess It was never a thought that stuck in my head to the degree it does now.  Even when Noah was seizing daily and we could not control them did I ever once think about death the way I do now. A silent fear that is my last thought each night. It is gripping.  As the last 5 years have passed and I have met families and mothers that have lost children facing the same disorder as Noah I cannot help but feel the thought is much more real tha...

Noah's femur is healing Well according to his Dr's however from looking at his X-ray myself and showing to a few friends all in the medical field there seems to be an agreement that to us it simply does no appear to be set right. I have to question at this point if it was set this way because the Dr's felt like this is as good as Noah's life will be or if his leg simply could not have tolerated any manipulation. At any rate I see a very long road ahead for my little man and I've decided (if He is able to travel considering How it was set) to. Get a second and third opinion. I am disappointed to say the least. I sometimes look at Noah and question why He was chosen to have to live this way. Not just that but How much can his body handle. In just this year we've been through five surgeries. It's got to be as wearing to his body as it is to my heart. I wonder How much longer I get to see him smile through all the pain and I worry what his future is going ...