My son, Hu Feiyang, is five years old this year and diagnosed with MPS VI, also known as Maroteaux-Lamy syndrome. One of the mucopolysaccharide diseases, this rare disease is estimated to affect about one in 215,000 births. Many of his symptoms, such as impaired vision and cardiac abnormalities, are typical of MPS VI. His joints are not flexible, and he suffers from nose complications.

Although there is no cure for MPS VI, there are treatments available. I have learned that there are drugs that can treat this disease in the United States, although expensive, and I want to be able to get help. My hope is to be able to connect to some medical institutions  such as the BioMarin Pharmaceuticals, Inc, the creator of Naglazyme. We can go to the United States!

In June 1, 2005, the U.S. Food and Drug Administration (FDA) granted approval for Naglazyme, the first enzyme replacement therapy approved for the treatment of MPS VI.

 

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