Testimonial

Testimonial

Dito, The First Diagnosed Pompe Patient in Indonesia

I was surprised to know that my third son, Dito (3 years old), was diagnosed as Pompe disease patient. I have never heard of the disease before. Previously, Dito was healthy according to his age until he was 10 months-old. Dito seemed to have difficulty supporting his body when sitting

Testimonial

A Rare Disease Does Not Limit Alif to Pursue His Passion to Paint

I have never expected that my third son, Muhammad Alif Maulana (15 years), of having a rare disease. Alif, as he is usually called, was born through normal labor in Jakarta. His birth weight was 3.3 kg, with a birth length of 47 cm. His growth and development are similar as other children

Testimonial

My Daughter’s Long Journey To Find a Diagnosis

Actually, there have been so many things that motivated me to write down my experience looking for the diagnosis and treatment for my daughter, Jessica. We have gone through a long journey until she could be diagnosed. However, I have not found enough time to do it because I have been focusing on her development.
 

Testimonial

Fero's story, 13 years finding the cure

My youngest brother Fero Adhi Mada (16 years old) were diagnosed with a rare disease of Mucopolysaccharidosis (MPS) Type IVA or more familiarly called as Morquio Syndrome (we are 4 siblings, I and my third brother is normal), where my little brother does not have Enzyme to split Glucose

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