Lissencephaly is a rare neurological disorder that affects the development of the brain. It is characterized by the lack of folding in the brain’s cerebral cortex, which is the outer layer of the brain that is responsible for many higher brain functions. These include thought, movement, and sensation. As a result, individuals with lissencephaly may have intellectual disability, difficulty with movement and coordination, and seizures.

The severity of the condition can vary widely, and some individuals may have more severe symptoms than others. Lissencephaly is caused by a genetic mutation, and it is usually diagnosed through brain imaging studies such as MRI or CT scans.

There is no cure for lissencephaly, but treatment may include medications to control seizures and physical therapy to help with movement and coordination.

The prognosis for children with lissencephaly depends on how badly their brain is affected. Many will die before the age of 10 years.  The cause of death is usually aspiration of food or fluids, respiratory disease, or severe seizures.  Some will survive but show no significant development — usually not beyond a 3- to 5-month-old level.

8 year old Erica with Lissencephaly

Erica was like a 3-month-old baby even at 8 years of age and she lived until just weeks before her 9th birthday. The primary cause of death was due to pneumonia.

Others with Lissencephaly may have near-normal development and intelligence. Because of this wide range, it is important to seek the opinion of specialists. In addition, don’t be afraid to seek help and support from family and groups associated with this rare disease. 

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