Family hit by rare disease pushes for more newborn testing - KPTV - FOX 12

Family hit by rare disease pushes for more newborn testing

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Photo: Wilson family Photo: Wilson family
Photo: Wilson family Photo: Wilson family

A local family hit hard by a rare disease is now pushing for a law that would test every baby born in Oregon.

The Wilson family lives in Dayton, and their 5-year-old son Marshall is dying from a condition called Krabbe disease.

His younger brother also has the disease, but it was caught in time to treat it, thanks to his brother.

Krabbe disease is a genetic and fatal neurological disorder. If untreated, children retain all cognitive function as they lose the ability to walk, talk and even swallow, leaving the children completely immobile until they eventually die.

Just after Marshall's diagnosis, his brother Michael was born. Michael's parents had him tested right away and found out he had the disease as well. Unlike Marshall, he was able to receive a lifesaving treatment through an umbilical cord blood transplant, which stopped the progression of the disease.

Tuesday, the Wilsons spoke with Oregon lawmakers, hoping to include Krabbe disease in Oregon's newborn screening program so that every baby will be tested before it's too late.

"As a parent, knowing that there was a disease out there that can be screened and treated, it should have happened. It would have saved my son's life," Marshall and Michael's mother Tammy Wilson said.

NFL hall of famer Jim Kelly founded Hunter's Hope after their infant son was diagnosed with Krabbe disease. His foundation has been working with the Wilsons on legislation.

Tammy Wilson says she hopes that Krabbe screening will become law as soon as the next legislative session in Oregon.

New York and Missouri screen for Krabbe disease at birth, and many other states have passed laws similar to what the Wilsons are proposing in Oregon.

Marshall has lived much longer than doctors expected. In June, he will be celebrating his sixth birthday. The family is hosting a walk called the Every Step Walk in Dayton to raise funds to fight the disease.

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