Family Voices
Sammy - Age 10
Sammy's favorite things are riding the bus to school, playing with his friends, telling jokes, and going on vacations with his family. But it wasn't always so.
As a baby, he suffered severe respiratory conditions and painful chronic ear infections. His parents have since learned that these are among the early symptoms of Hunter syndrome. When he was 2, he received his diagnosis. In the years that followed he had his tonsils and adenoids removed, underwent aortic valve replacement, and was frequently hospitalized for other kinds of treatment. From the day Sammy was diagnosed, his parents have been committed to learning, networking with other parents through the National MPS Society, and maintaining the best possible care and quality of life for their son.
"Today we have an opportunity to increase public awareness and tell families that there's hope out there,” says Sammy's mom Vangie. “We have to talk about it. Even though Hunter syndrome is a rare disease, if parents know the signs and symptoms and what to look for, they can be more informed and know where to get resources and treatment."
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