Hello! We are George and Richelle Law. Our daughter Corleen was born with a rare brain condition called X-Linked Lissencephaly with Ambiguous Genitalia (XLAG). This site is dedicated to her memory with the hopes that it will help other parents faced with learning their child has X-Linked Lissencephaly with Ambiguous Genitalia (XLAG)or another form of Lissencephaly.
We hope that our experiences will help you.
What is Lissencephaly?
Lissencephaly is a group of disorders related with abnormal neuronal migration during the gestational period. Lissencephaly comes from the 2 Greek words“lissos” (smooth) and “enkephale”(in the head) and means smooth brain. Lissencephaly is aNeuronal Migration Disorder. Normally, while the brain is developing during pregnancy, neurons develop in the center of the brain and migrate to the outer layers of the brain, forming the “grey matter”. In Lissencephaly kids, something goes wrong during this migration and the neurons are left scattered throughout the brain, leaving incomplete connections.
Lissencephaly includes several different conditions such as Miller-Dieker Syndrome (MDS), Isolated Lissencephaly Sequence (ILS), Lissencephaly with Cerebellar Hypoplasia (LCH), Walker-Warburg Syndrome (WWS) ,Fukuyama Congenital Muscular Dystrophy (FCMD), Muscle-Eye-Brain disease(MEB) ,Microlissencephaly (MLIS), Subcortical Band Heterotopia (SBH), X-Linked Lissencephaly with Ambiguous Genitalia (XLAG), Microcephaly with Simplified Gyral patterns (MSG) and Polymicrogyria (PMG).
What causes Lissencephaly?
Almost all of these conditions are due to genetic abnormalities, however, the chromosomes and genes involved differ depending on the detail of the clinical observations. Getting a definitive diagnosis can be difficult – many of the genes are still unknown, so genetic tests may be inconclusive.
In Loving Memory
Corleen Elizabeth Law
How will Lissencephaly affect my child?
The first thing to remember is that every child is different. Some lissencephaly children walk and talk and are only mildly affected. Other children, like Corleen, are profoundly affected by the effects ofLissencephaly. The biggest commonality across all forms of Lissencephaly is seizures. The seizures inLissencephaly kids usually are caused by the incomplete neuro pathways in the brain. The seizures are accompanied by developmental delays. Other common problems include feeding problems, respiratory problems.
Where can I learn more about Lissencephy?
The Lissencephaly Loop is a mailing list of families affected by Lissencephaly. Currently, there are over 500 members from all over the world. If a family member, such as your child, neice/nephew, grand child, has lissencephaly, you are welcome to join the “Loop”. As part of the sign up process, we ask that you complete a registration form which will also add your families information into the Loop’s directory. The directory can help you connect with other families within your state or with the same diagnosis. We also maintain state by state “notes” on services and assistances for special needs children. Membership to the “Loop” is restricted toFamily Only. Please Email Us with any questions on joining the loop. We also maintain a separate mailing list, called Lissencephaly-Pro for non-family members, such as teachers, nurses, and Doctors.