His name is Amro and he was born in Palestine in Hebron. He was born with a disease called Maroteux-Lamy Syndrome. Patients with MPS VI lack an enzyme that breaks down a complex sugar (glycosaminoglycan). Without the enzyme the sugar remains in the cells and accumulates and causes connective tissue damage. The skeleton is most affected and heart valves, spleen liver and cornea. Children with this disease tend towards small stature. Childrens Hospital Oakland had had the first clinical trial of the drug Naglazyme in 2005. The food and drug administration approved Naglazyme for us in children ages five years and older. Childrens Oakand is the only site in the US and only one in three in the world doing early intervention trials. The drug is produced by a Novato based pharmaceutical company called BioMartin.
Amro was found living in Hebron and doctors from Hadassah hospital referred him to Childrens.
Amro and his father are living in Oakland while Amro undergoes treatment.
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