SURVIVING TWO THRIVING...with L1cam Syndrome

a·pha·sia is the loss of ability to understand or express speech, caused by brain damage.   Aphasia gets in the way of a person’s ability to use or understand words. Aphasia does...

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....

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...

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...

Loving someone who is RARE is a precious honor.  I am thankful God has given me the privilege to love 2 special RARE people in this life.  This RARE condition is...