May 7, 2020

Angwin’s Ethan Jeffcoat, 17, dies after suffering from a rare, genetic brain disease | News

Wyatt, 22, was working in the parts department at a Santa Rosa Chevrolet dealer before he was laid off. Originally, he was doing mechanics work but medical staff told him he could no longer do that work because of the possibility of cuts and resulting infections. Daryl said the two boys are together, “trying to figure out what comes next.”

In June 2018, doctors treated Wyatt’s ALD with a stem cell implant, designed to stop the progression of the disease in his brain. It was “totally successful,” Daryl said, although time is needed for Wyatt’s immune system to rebuild itself, since chemotherapy was used to kill it before the stem cells were implanted. “He’s got the right markers for his immunity growing,” but Wyatt is still easily susceptible to infection, Daryl said.

This month, Wyatt is scheduled for his yearly checkup at Stanford’s Lucille Packard Children’s Hospital, which includes an MRI and two or three days of tests. Robyn said this year, she’s glad she will get to go with Wyatt to all of these appointments, “because I have the freedom now to be able to do that.”

Two years ago, after the stem cell implant, Daryl, Robyn and Grant were taking turns caring for both Ethan in Angwin and Wyatt in Palo Alto. The schedule was brutal, because they were 200 miles apart and needed care 24 hours a day, seven days a week. Daryl said it was a crazy time, but added, “It worked out, but it was a very trying schedule.”

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