Oregon family battles ultra-rare disease

PORTLAND, Ore. ( KOIN ) — An Oregon family is raising awareness over an ultra-rare disease that affects only 100 children worldwide.

The disease is called SPG50, a genetic neurodegenerative condition that affects both the brain and the body and often leads to a shortened lifespan.

There is only one known child in Oregon diagnosed with SPG50 and his name is Lincoln.

Lincoln’s parents, Jordan and Cody Medeiros, joined AM Extra to tell more about the disease, and share their son’s story.

You can support their cause by getting tickets to the upcoming fundraiser dinner, A Night in Lincoln’s Corner on September 15.

Watch the full video in the player above.

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