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...

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...