Hunter syndrome, also called mucopolysaccharidosis II or MPS II, is a rare disease that's passed on in families. It usually affects only boys. Their bodies can't break down a kind of sugar that builds bones, skin, tendons, and other tissue. Those sugars build up in their cells and damage many parts of the body, including the brain. Exactly what happens is different for every person.
When your son has Hunter syndrome, there are things you can do to help him play, have friends, and do some of the things that other kids do, even though he may look different from his pals.
Few parents expect their children to develop heart disease. So when her daughter Alex started gaining weight at age 7, Tammy Benton was concerned -- but not overly concerned. Working with a pediatrician, she tried to encourage Alex to eat more healthfully.
"I didn't talk 'diet' to her," recalls Benton, 46, of Essexville, Mich. Instead, she pointed her daughter to better choices such as fruit instead of candy. Alex did lose some weight but eventually gained it back. By the time she was 14, she weighed...