Story about Pontocerebellar Hypoplasia .

Benjamin, PCH3

Aug 10, 2017

Pontocerebellar Hypoplasia

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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.