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** 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 boys were diagnosed with Hydrocephalus at birth. Congenital hydrocephalus accounts for approximately 50% of all forms of hydrocephalus.

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?

So Greatly Loved

sogreatlyoved

Hope For The Broken Hearted

Blog by Debbie Kay, Founder of Hope For The Broken Hearted Ministries