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I never dreamed I would hear him say it. As a mom of a child with special needs, I can say that this was so rewarding for me and for him.
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)
I never thought I would see the day of being able to meet other families that walk in my shoes daily. For so long I begged and pleaded with God to help me find someone…surely I can’t be the only one in the world?
SURVIVING TWO THRIVING...with L1cam Syndrome 