SURVIVING TWO THRIVING...with L1cam Syndrome

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I never dreamed this emergency room visit would be our last. A statement that I have always heard through the years is that “a person never realizes what they have until it is gone”. Well, tonight I completely had a meltdown. I believe that statement is true. I was wanting my dad to come back and tell me that he was no longer sick, and that he was going to take my… Read More

  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

 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 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?

Placing a feeding tube is a relatively simple surgery, but it is only recommended for complex conditions. Tube feeding is a way to provide nutrition to people who cannot or will not eat and/or drink enough to keep their body healthy. Tube feeding is sometimes used on a short-term basis until a patient’s condition improves. Other times, it is a permanent method of feeding and is impossible to stop without resulting in… Read More

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