SURVIVING TWO THRIVING...with L1cam Syndrome

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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?

I am numb.  I don’t have any words of wisdom or encouragement for myself or to give anyone this very minute. My brain is trying to stay positive but in my heart I know that another battle is about to begin.  I know God will be with me through this. There is no doubt about that. I am just scared.  We received some bad news and I am having a hard time… Read More

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

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 answers.  I want to know why my child is hurting and no one can fix this problem.

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