Betsi

Betsi is my only daughter. Her language is “song.” She sang before she could speak. Throughout the day, she sings at home and school, and at church, everyone knows her for her singing. Her voice is not ordinary—it is angelic. I can't even understand how she sings like she went to music school before she was born. She experiences situations through song. She will sing about her fears in a doctor's room while she waits to get her blood drawn. She can create a song anytime about anything, and it is always in tune and with meaning as if it was rehearsed. She is very independent, and always says, “I will do it myself.” Betsi is very loving to other kids and sociable, and they love her for her singing.

~Eda, Betsi’s Mom

Morquio Syndrome
Morquio syndrome (mucopolysaccharidosis type IV; MPS IV) is a mucopolysaccharide storage disease that exists in two forms (Morquio syndromes A and B) and occurs because of a deficiency of the enzymes N-acetyl-galactosamine-6-sulfatase and beta-galactosidase, respectively. A deficiency of either enzyme leads to the accumulation of mucopolysaccharides in the body, abnormal skeletal development, and additional symptoms. In most cases, individuals with Morquio syndrome have normal intelligence.

The clinical features of MPS IV-B are usually fewer and milder than those associated with MPS IV-A. Symptoms may include growth retardation, a prominent lower face, an abnormally short neck, knees that are abnormally close together, flat feet, abnormal sideways and front-to-back or side-to-side curvature of the spine, abnormal development of the growing ends of the long bones, and/or a prominent breast bone.

Artist: Kelly Li