INFORMATION

What is Lissencephaly?

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What is Lissencephaly?

Lissencephaly is a rare neurological disorder that effects about 1 in 100,000 births, which classifies it as a rare disorder. Most individuals will likely be cognitively and/or physically impaired, though each individual's progress will vary significantly. Some children will remain closer to a 3-5 month mentality, others a 6-12+ month mentality and even some will have near "typical" functions. Lissencephaly individuals vary greatly, even the grading chart can be misleading in some cases. With all of the advancements in medicine and therapies these children are living much better & healthier lives than they were 15+ years ago.

 

*DEFINITION:

Lissencephaly, which literally means "smooth brain," is a rare, gene-linked brain malformation characterized by the absence of normal convolutions (folds) in the cerebral cortex.

*TREATMENT:

There is no cure for lissencephaly, but children can show progress in their development over time. Supportive care may be needed to help with comfort, feeding, and nursing needs. Seizures may be particularly problematic but anticonvulsant medications can help. 

*This information was pulled directly from the NIH website

https://www.ninds.nih.gov/Disorders/All-Disorders/lissencephaly-Information-Page

 

These images were found on google, they show a grading chart for children with Lissencephaly. Grading does not necessarily define wether your child's condition is more or less severe, each case is very different & the brain is very complex. In these images "A" is the front of the brain "P" is the back of the brain.

Lissencephaly brain grades

We are USA based but working on helping families worldwide, most of our programs happen in the US, Canada, Australia, & UK. Eventually we would like to expand even more.

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