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Schizencephaly Awareness WeAreRare.org

This is a blog about my journey with Noah and a rare disorder called Schizencephaly. I share stories of other children, Families, and of course resources for families. We Are RARE Is a non profit for Children and young adults suffering from a very rare neurological disorders like schizencephaly. Noah is 13 and missing over 40% of his brain .

You will never walk alone

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By Perimenopause mama - July 18, 2013

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.

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The story of Phillip Mims. and schizencephaly

By tricia - June 04, 2012

THE STORY OF PHILLIP MIMS I was born breech in the early 1970's. This was a time before CT scans and MRI's. Because of being breech I lacked oxygen at birth, and I was diagnosed with mild Cerebral Palsy. My left side was more affected than the right which means that my right side of my brain has more damage I was never told or treated like anything was wrong with me. My mother believed in tough love and told me if I don’t learn to be independent I might not have anyone to rely on one day. I was told God healed me, a little blind faith. I don’t remember too much but I know my Mother made me walk she held me up until I could hold myself up. There were a lot of falls and cuts broken fingers but, even when I fell and hurt myself I was forced to continue until I did it better. Usually she chanted prayers and yelled at me like a drill Sargent to encourage me to push on forward. We went to a lot of Evangelist tent meetings and got prayed for. I was usually the one the showed peo...

My biggest dream

By Perimenopause mama - July 15, 2013

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...