Unaffordable ERT for Pompe

I am George, aged 13 and has been diagnosed on 14 June 2007 to be suffering from Pompe’s. I reside in Trivandrum, Kerala State, India. During 2004, when I was 8 years old, my parents noticed that I was slow in physical activities especially climbing stairs. I could run with difficulty and could get up from the floor with lot of difficulty. Tests including muscle biopsies, thereafter over a period of time at various hospitals indicated muscular dystrophy. Since we could not get a proper diagnosis done, enzyme assay using cultured skin fibroblasts and dried blood spot was carried out through Dukes University, USA. The results confirmed Pompe's Disease.
There is really no medicine for this genetic disorder. However, Genzyme Corporation based in USA has developed Enzyme Replacement Therapy (ERT), a medicine under the brand name Myozome. However the cost is so exhorbitant that a few thousands of patients in the world like me cannot afford to avail this medicine and thus be saved.
Thus a treatment is beyond imagination now. I am waiting for a miracle to happen.