Jessi Beyer, 15, wants to make sure no other babies die of immune disorder

by: COURTESY PHOTO - Jessi Beyer, 15, hopes to raise $5,000 from the run/walk she organized to protect other babies from a rare immune disorder.A 15-year-old Banks girl swung into action when she learned the baby boy of family friends had a potentially fatal illness.

Jessi Beyer hoped to raise money to help pay for medical care. But when little Jordan Paul Janeway died, her effort transitioned into trying to make sure this tragedy wouldn’t strike another family.

Honoring Jordan’s memory, runners and walkers will tackle a 5K course through Forest Grove on Saturday, Oct. 12, to raise awareness of the need to test infants for Severe Combined Immunodeficiency.

“When they come participate, they are supporting this baby and this cause,” Jessi said. “Jordan was just nine months old when he passed away from a reversible disease.”

Babies with SCID lack T-cells, which our immune systems use to defend against viruses, bacteria and fungi. Without these protective cells, infants who may appear normal at birth become sick and die, usually before their first birthday, from infections a healthy infant’s immune system can fight off.

Babies with SCID have a chance of living if diagnosed in time to be treated, usually through a bone-marrow transplant. But only 16 states screen newborns for the disease. Oregon is not yet one of them.

Jordan, son of Ryan and Heidi Janeway of Banks, passed away from complications of SCID on July 1. Had he been screened for the disease, the chance of him surviving would have been greater, Jessi said.

That lost opportunity sparked her to organize the Friends of Jordan Memorial 5K Fun Run & Walk.

Jessi, who has never organized a race before, hopes it will become an annual event. “Long term, I hope to make SCID screening part of Oregon’s screening,” she said.

Adidas has donated T-shirts for the event, and Beacon Productions is donating music.

Funds raised will go to a memorial trust to help increase awareness of the need for newborn screening. Jessi’s goal is to raise $5,000 for the trust from race registration fees and donations. She figures she is near $3,000, with more than 100 participants already registered and 10 days left to sign up or to become a race sponsor.

“Hopefully we can save other families the agony of losing their child as well,” Jessi said.

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