SURVIVING TWO THRIVING...with L1cam Syndrome

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 November is Epilepsy Awareness Month.    The Merriam-Webster dictionary gives this definition of the word Epilepsy. Definition of epilepsy  : any of various disorders marked by abnormal electrical discharges in the brain and typically manifested by sudden brief episodes of altered or diminished consciousness, involuntary movements, or convulsions.

  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. 

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

I will probably never understand Seizures. Every time Brandon had one, It would throw him back into learning what he had just learned. It broke my heart to see him in such distress when I couldn’t do anything about it.  He would be unconscious for days.

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?

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