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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)
Today has been another “ok” day. Brent is so ready to get back in the swing of things with going to school and doing his routine. He loves a schedule and if it gets off track, he does not like it. He is thriving and I am so happy for him that he is still fighting his disability He is one tough teenager!
I am numb. I don’t have any words of wisdom or encouragement for myself or to give anyone this very minute. My brain is trying to stay positive but in my heart I know that another battle is about to begin. I know God will be with me through this. There is no doubt about that. I am just scared. We received some bad news and I am having a hard time… Read More
a·pha·sia is the loss of ability to understand or express speech, caused by brain damage. Aphasia gets in the way of a person’s ability to use or understand words. Aphasia does not impair the person’s intelligence. People who have aphasia may have difficulty speaking and finding the “right” words to complete their thoughts. They may also have problems understanding conversation, reading and comprehending written words, writing words, and using numbers.
SURVIVING TWO THRIVING...with L1cam Syndrome 