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Lissencephaly, My Daughter, and Our Story

חסר תרגום בשפה עברית. מוצגת שפה אנגלית
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Gerrard Channel

What is lisencephaly?

My name is Meela. I have 3 children, one of them was born with lissencephaly. Lisencephaly is a rare brain disorder. Only 1 in 100.000 babies was born with this condition. What is lisencephaly? Imagine a human brain without curves and wrinkles. Yes, it's smooth. Therefore, lissencephaly is also called a smooth brain. Not only lissencephaly, but she also has a smaller head circumference than the average girl at her age. This condition is called microcephaly. She also has some brain problems. They are infarction of the basal ganglia, mild hydrocephalus, and thinning of the corpus callosum. It caused cerebral palsy. Cerebral palsy makes it difficult for her to control her muscles. At 4.5 years old, she still looks like a newborn. She can't control her head yet and she's still very dependent on me. Even though the condition sounds bad, it doesn't make us weak at all. Look at her cute smile. She really is a strong kid. They said a child born with lissencephaly will not be able to survive until the age of 10 years. Aspiration and pneumonia are the leading causes of death in lissencephaly. But it's okay. Life and death are God's will. We can only try and pray.

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