BartJan

Our son BartJan was 6 weeks old (born 14-10-1998) when we heard the diagnoses ”Pompe´s disease”. The doctor didn’t trust some signs BartJan was showing and did some tests to find out what was wrong. Our world collapsed when the seriousness of this disease...

SARI

Background We are the parents of Sari, a Belgian girl of 4.5 years old suffering from infantile Pompe´s disease.  Based on the normal development of the disease, Sari would have passed away already, probably before her 1st birthday. However she has been receiving an...