SURVIVING TWO THRIVING...with L1cam Syndrome

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  The song “I’ll Run with you” is one of my favorites that is sung by Broken Vessels.  When I first heard it, I knew I wanted to make a video of some of my favorite pics of the boys. 

Life has a way of lifting you up in the most exciting times and tear you down in some of the most horrific times.   Some say it’s whatever road you choose to follow.  Whether good or bad, YOU choose!  I think that God somehow, someway saw fit that He chose me for this specific unique life with my boys.

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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