Bentley’s Journey
My nephew Bentley Micheal Holtsclaw was born on April 18, 2013, with a rare brain disease called unilateral open lip schizencephaly. This rare neurological birth defect has completely baffled neurologists around the world because no revolutionary information has surfaced. However, there are a few characteristics of this disease that separates it from other neurological malformations.
Information about Schizencephaly:
The classifications of this disease includes either bilateral, unilateral, open lip, and closed lip. These terms may seem a little confusing at first, but each of these terms describes different characteristics of the disease. For instance, bilateral is a term that refers to abnormal clefts on both sides of the brain. Conversely, unilateral is a term that refers to clefts residing on only one side of the brain. Similarly, open lip refers to the cleft walls being separated and filled with cerebrospinal fluid. Closed lip refers to the cleft walls being in a state of apposition, or located side by side. Bentley’s diagnosis of unilateral open lip schizencephaly means that the cleft is only on one side of his brain, but the cleft walls are separated and engulfed in cerebrospinal fluid.
Purpose of Post
The purpose of this blog post is to inform more people and raise awareness about schizencephaly and other neurological disorders that often go unnoticed by the public. Also, it helps to receive support from others as we help Bentley along his journey to happy and satisfactory life. I hope that this post will inspire others to take the time out of their day to research this disease and find ways to support the research and development processes that could potentially save the lives of so many people. I will continue to update everyone with Bentley’s status as we finish up with upcoming appointments. If there is something that has been left out, please feel free to comment below. I’m human, which means that I am capable of making mistakes too. Thank you for your time everyone, and I hope that everyone finds time to enjoy the holidays!
