Ben was transported to the local hospital by helicopter where attempts were made to revive him. None were successful. "Our apparently healthy son was dead within 12 hours of showing symptoms of illness," says Haygood.

An autopsy was performed, and the Haygoods were told their son had Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCAD) – a rare hereditary disease that is caused by the lack of an enzyme required to convert fat to energy. People with MCAD cannot fast for very long.

To add to the Haygoods' grief and devastation, they learned soon after the diagnosis that his disorder could have been detected at birth or any other time before his fatal crisis with a $25 blood test. "With an early diagnosis, a treatment plan would have been devised, and Ben's prognosis for a normal, healthy life would have been excellent," says Haygood. "One doctor told us that with early detection of the MCAD disorder Ben would most surely be alive."

Since his death, the Haygoods have been busy promoting expanded newborn screening. Two local state representatives wrote a bill to require that doctors at least inform parents of these additional tests (supplemental screening tests) that are not required by law, so that parents can make their own educated choice. Titled "Ben's Bill," it was signed by the governor of Mississippi on April 16, 2001.

There are other issues involved besides a universal expansion of the number of disorders screened for at birth. There is talk, say parents like Haygood, but there needs to be action.

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