SLIDESHOW: Living with Pompe

By Rem Zamora,

Posted at Nov 19 2012 04:35 PM | Updated as of Sep 03 2015 08:37 PM

Pompe is a rare, progressive and often fatal neuro-muscular disease, causing progressive muscle weakness throughout the body.

Despite being bound to his wheelchair and dependent on a breathing apparatus 24/7, the disease hasn't stopped Juan Magdaraog from trying to live a normal life.

This is his story: a story of coping and living a life that matters not only to himself but to others as well.

Magdaraog is a patient-advocate of the Philippine Society for Orphan Disorders, an organization that aims to help sustain a better quality of life for individuals with orphan or rare disorders.