News from WCCO.com Apr.9, 2007

Two Brothers Suffer From Rare Genetic Disease
(WCCO) The University of Minnesota is one of three places in the country offering groundbreaking treatment for a rare genetic disease. Hunter Syndrome is an enzyme deficiency that stops the breakdown of sugars in the body. The sugars build up and become toxic.

"Ninety-nine percent of boys afflicted with it don't see their 20th birthday," said David Padilla whose two sons were diagnosed with Hunter Syndrome a year ago. His family moved to Minnesota to save the boys' lives.

Chikara Padilla is a happy 6-year-old but his stiff muscles and constant ear infections left his parents with a sinking feeling.

"I thought something might be wrong, but then again each child is different," said Hiromi Padilla, the boys' mother.

A year ago Chikara and his 2-year-old brother Mishima were diagnosed with Hunter Syndrome.

In June, Chikara experienced heart failure. At the time the Padilla's lived in rural Michigan and no one could help their boys.

So the Padilla's, who have a total of six children ranging in age from 2 months to 13-years-old, moved to Minnesota where a new treatment was being done.

"It has significant positive affect on patients. Longevity issues are still questionable," said David.

Every Tuesday, the boys come to the U of M for four hours of enzyme replacement therapy. They are injected with the drug Elaprase which was recently approved by the Food and Drug Administration, and one of the most expensive drugs in the world.

The treatment left the Padilla's with medical bills and an eviction notice. Their neighbors in Zimmerman, Mich. tried to help.

"We have to tell each other what's going on and not be caught up in competing that we don't know what's going on with each other for real" said Sara Poff who lived near the Padilla's before they were evicted.

The Padilla's are living in the basement of another family's home and their boys now get state insurance. The best news is the boys are getting help.
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