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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
This was an amazing night. Several Southern Gospel Groups, including Saving Faith (the group I sang with), got together and had a benefit singing to raise money for the David Zills Memorial Fund for ALS. I enjoyed singing with Broken Vessels that night several years ago. I came across this video and wanted to share. “In The Garden” ENJOY!
A tear silently rolled down my cheek as I opened a letter that was addressed to my son today. I looked at my husband and said, “I’m sure he could care less about his Medicaid and everything going on in this world today because he is free of all the chaos and why would the State want to send a letter in the mail for him to vote? Do they not know that almost… Read More
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?
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
SURVIVING TWO THRIVING...with L1cam Syndrome 