PCH Awareness

Pontocerebellar Hypoplasia is a rare genetic disorder consisting of several different types and subtypes. These types are identified by the gene that has caused the mutation. Due to the rare form of this disorder, there are still some types that have not yet been identified. These unknown types are identified by an MRI of the brain where the Pons and Cerebellum are underdeveloped. The Pons is the primitive brain, it controls many things we don't control: heart rate, temperature, breathing, swallowing, etc. The Cerebellum is the coordination center of the brain. Most children with PCH have a hard time sitting, standing, reaching for an object, balance, etc. Often times, seizures are associated with this disorder along with feeding and breathing difficulties. It's a very complicated disorder, with only treatment to symptoms... no cure.

The PCH community works together to help each other with guidance and support. Although the community is spread throughout the world, the community has come together as a family to help each other through this hard and unpredicted life.