Story about Pontocerebellar Hypoplasia .

Benjamin, PCH3

Aug 10, 2017


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. 

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Pontocerebellar Hypoplasia diagnosis

How is Pontocerebellar Hypoplasia diagnosed?

Pontocerebellar Hypoplasia advice

Which advice would you give to someone who has just been diagnosed wit...

Pontocerebellar Hypoplasia cure

Does Pontocerebellar Hypoplasia have a cure?

Is Pontocerebellar Hypoplasia contagious?

Is Pontocerebellar Hypoplasia contagious?

Couple and Pontocerebellar Hypoplasia

Is it easy to find a partner and/or maintain relationship when you hav...

Celebrities with Pontocerebellar Hypoplasia

Celebrities with Pontocerebellar Hypoplasia

Pontocerebellar Hypoplasia prognosis

Pontocerebellar Hypoplasia prognosis

Pontocerebellar Hypoplasia life expectancy

What is the life expectancy of someone with Pontocerebellar Hypoplasia...