Tag Archives: X-linked

“I’ll Run with You”

  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. 

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Acceptance and the LOVE of Football

  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 … Continue reading

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My Kind Of RARE

 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 … Continue reading

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Blind

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 … Continue reading

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L1CAM Family

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 … Continue reading

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X-linked Hydrocephlaus

X-linked hydrocephalus (L1 syndrome) **September is Hydrocephalus Awareness month** Hydrocephalus is referred to as water on the brain.  The water is called cerebrospinal fluid (CSF), a clear liquid that is produced in the 4 ventricles (cavities) of the brain. My … Continue reading

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Just another ER visit…..

It has been a full day at the Emergency Room at the Children’s Hospital.  I do not understand why things happen the way that they do but there is a reason of some sort for it.  I am looking for … Continue reading

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