> Pontocerebellar Hypoplasia > Stories

Benjamin, PCH3

Ben was diagnosed at the age of one and a half with PCH3 through MRI.  

Ben's condition includes Optic Nerve Atrophy, Cortical Visual Impairment, Epilepsy, Microcephaly, Club Foot, etc.  He was born in 2008 and is maintains a small stature (approx 3'3" and weights 32lbs).  

He maintains a strictly formula based diet and orally feeds through a bottle; he is given additional formula, medication and water for hydration through his gastrointestinal tube (mickey).  

For more about Ben, you can find information on his blog:  inlovewithben.wordpress.com or more recently on Facebook at Being Benjamin, PCH3. 

World map of Pontocerebellar Hypoplasia


Find people with Pontocerebellar Hypoplasia through the map. Connect with them and share experiences. Join the Pontocerebellar Hypoplasia community.