Lissencephaly

Lissencephaly? Until today, I had never heard of it, and if it wasn’t for something horrible going on in Florida, I probably never would have heard of it. Yet from horrible situations, it is possible to bring about some good, raising awareness about health issues and how the government doesn’t always respond wisely.

Lissencephaly, which means ‘smooth brain’, is a genetic defect caused by mutations of genes on chromosome 17 and X. For the biology geeks, ‘Classical lissencephaly may be caused by mutations of genes in chromosome bands 17p13.3 and Xq22.3-q23’, according to the lissencephaly research project. The Wikipedia article about lissencephaly states that “The prognosis for children with lissencephaly varies depending on the degree of brain malformation. Many individuals show no significant development beyond a 3- to 5-month-old level. … Many will die before the age of 2”

So, what do you do for a 19 year old woman, who has managed to keep her child alive to age four, even though he has only managed to grow to ten pounds? Perhaps you find special ways of helping her with this difficult situation, provide her with extra support, or something like that.

Well, that isn’t how they handle things in Florida. Instead, she was charged with second-degree felony child neglect. She was arrested and spent more than four days locked up, held on $100,000 bail before a judge ordered her release.

Today, I received emails from a few different sources. Each of them were forwards of messages sent by Dr. David Ledbetter of the Department of Human Genetics, Emory University School of Medicine in Atlanta. Dr. Ledbetter is noted for his work on Lissencephaly and was sending on a request from Dianna Fitzgerald. Ms. Fitzgerald is president of the Lissencephaly Network.

She has started a petition to Exonerate Erin and Give her child back. The petition asks Florida Governor Crist to “Drop the charges against Erin and send her son home.” Personally, I think the petition asks for way too little. There needs to be a serious investigation into how the Santa Rosa County’s Child Protection Team could have handled this so badly.

So, please, sign the petition, and use this to help raise awareness of lissencephaly and other childhood illnesses that parents struggle valiantly to cope with.

signed

Thanks to everyone who has