SURVIVING TWO THRIVING...with L1cam Syndrome

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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

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 not impair the person’s intelligence. People who have aphasia may have difficulty speaking and finding the “right” words to complete their thoughts. They may also have problems understanding conversation, reading and comprehending written words, writing words, and using numbers.

Placing a feeding tube is a relatively simple surgery, but it is only recommended for complex conditions. Tube feeding is a way to provide nutrition to people who cannot or will not eat and/or drink enough to keep their body healthy. Tube feeding is sometimes used on a short-term basis until a patient’s condition improves. Other times, it is a permanent method of feeding and is impossible to stop without resulting in… 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** 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.

So Greatly Loved

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Hope For The Broken Hearted

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