Welcome

This page has been set up by families who have children with a DNM1 genetic mutation – our little dynamos!

Very recently research has revealed several genes that are thought to be responsibile for epileptic encephalopathy and developmental delay. Families with children who until recently had no diagnosis are now starting to join together to share their stories, and learn from one another.

Some of the children have seizures, some have infantile spasms, all have the epileptic encephalopathy, and all have some form of developmental delay.

This page tells their story.

We hope to build a community and engage the researchers and neurologist worldwide to share and learn from our children, in the hope we can get an effective treatment.

This page is for information sharing only and does not offer any medical advice or treatment – please consult your health professional before making any changes to current treatments.

Advertisements