SURVIVING TWO THRIVING...with L1cam Syndrome

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 November is Epilepsy Awareness Month.    The Merriam-Webster dictionary gives this definition of the word Epilepsy. Definition of epilepsy  : any of various disorders marked by abnormal electrical discharges in the brain and typically manifested by sudden brief episodes of altered or diminished consciousness, involuntary movements, or convulsions.

  We all want to be accepted for who we are in this life.  Right? As a special needs mom, I want this for my son. ACCEPTANCE. I have never seen him so excited than this very day (other than at church) Ha Ha! Some of Brent’s classmates, his teacher and coach, all came over to our home, as well as the local newspaper, and presented him with a team jersey. Go… Read More

What is (CVI) Cortical Vision Impairment?  It is what my child has been diagnosed with. The medical term from childrenshospital.org is: Cortical Visual Impairment (CVI) is the most common cause of permanent visual impairment in children (1-3). The diagnosis of CVI is indicated for children showing abnormal visual responses that cannot be attributed to the eyes themselves. Brain dysfunction must explain the abnormal visual responses, as abnormal ocular structures, abnormal eye movements, and… Read More

 Loving someone who is RARE is a precious honor.  I am thankful God has given me the privilege to love two special RARE people in this life.  This RARE condition is a chromosome disorder of the L1cam gene and it’s a neurological disorder called L1 Syndrome. Daily struggles make it worthwhile when the smallest little grin comes across my sweet boys faces or hearing the laughter and seeing the silly faces they make… Read More

I think I am drowning in my own sorrow.  I’m the lady who can handle everything that comes her way…. ya, NOT so much! I am drowning.  I pick myself up off the ground every single day hoping that I have made some sort of difference in a person’s life.  My son’s life. His life matters! Brently’s life does matter!  He has a purpose! God says he does. (Jer. 29:11)

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