SURVIVING TWO THRIVING...with L1cam Syndrome

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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)

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?

Hereditary spastic paraplegia  is a general term for an expanding group of rare genetic disorders characterized by slowly progressive weakness (paraplegia) and increased muscle tone and stiffness (spasticity) of leg muscles. Other symptoms can occur in the pure subtypes including bladder dysfunction or abnormal sensations in the lower legs or feet. HSP is classified as “complex” or “complicated” if additional symptoms are present such as an inability to coordinate voluntary movements (ataxia),… Read More

X-linked hydrocephalus (L1 syndrome) **September is Hydrocephalus Awareness month** The Hydrocephalus Association describes X-Linked Hydrocephalus and Finding our way with L1cam!  Check it out!! Hydrocephalus comes from the Greek words hydro meaning water and cephalus meaning head. Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles. Cerebrospinal fluid is produced in the ventricles and in the choroid plexus. It circulates through the ventricular system in the brain and is… Read More

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