Today, Saturday 9 September, is Polymicrogyria Awareness Day. Lyla was born nearly 5 years ago with the rare neurological disorder, Polymicrogyria.
Literally translated this means, ‘many little folds’. Basically part of Lyla’s brain formed in utero with too many little folds which means that the signals from her brain to her body get confused, lost and bounce around the place.
Some children are born with this after their mother contracted a virus called CMV during pregnancy but in Lyla’s case there is no known cause. She is a one in a million genetic fluke.
There are various types of PMG depending on what part of the brain is affected. Lyla’s is Bilateral (both sides) Perisylvian (on the sylvian fissure parts of the brain) polymicrogyria. The symptoms of polymicrogyria are so varied from person to person that it is impossible to talk about generalised symptoms.
The sylvian fissure is the area of the brain which controls the mouth and face which is why Lyla is non-verbal and unable to eat food which is not pureed. Although there are other people affected who have trouble speaking but are verbal and don’t have problems eating.
Lyla has a lot of uncontrolled movement which is very unusual with PMG. Neurologists suspect Lyla also has a movement disorder which causes this, which they have been unable to diagnose. She is also unable to sit or stand unaided whereas many children with Lyla’s type of PMG can walk, run and play so as I said it’s very hard to generalise symptoms as they are all so very unique. Polymicrogyia can also cause visual impairment but this isn’t something which has affected Lyla.
The majority of children born with PMG have seizures. For many in our little community these seizures are life limiting. I count my lucky stars every day that so far Lyla is seizure free but it is always a fear at the back of my mind that they could start at any time.
Polymicrogyria is an extremely rare disorder and very little is understood about it. At this point there is no cure so our focus is on therapy at every opportunity to give Lyla a full understanding of her body. In doing this we hope that she can build the neural pathways in her brain to allow her to develop new skills and abilities.
We talk about Lyla having quadriplegic cerebral palsy which is the result of her having PMG. Cerebral Palsy describes her symptoms, bilateral perisylvian polymicrogyria is her primary diagnosis with an undiagnosed movement disorder secondary.
*All these words are my own. I am explaining Lyla’s disorder as I understand it, which is not in medical terms and may not be your experience or your understanding.