After his brother dies of a rare disease, Irvine boy receives new treatment at CHOC for same condition – Orange County Register

Ten days after their 6-year-old son, Titus, died of a rare genetic disease last year, Daniel and Bekah Bowman boarded a plane to begin the grueling fight to save his younger brother.

For the next six months, the Bowmans traveled every 10 days from Irvine to a Columbus, Ohio, children’s hospital where Ely, 4, received an experimental brain infusion for Batten disease. The inherited, fatal disorder, which claimed Titus’ life, eventually leaves children blind, bedridden and demented.

The three-hour time difference and change from sunshine to snow were not unlike the family’s fluid, ongoing passage between hope and grief. The trip to Ohio represented the promise of helping Ely while the trip back meant the emptiness of a home without Titus.

“All the way through, I felt broken but not completely destroyed,” Bekah said. “I learned how to slow down and appreciate each moment and really see the gifts God has given me in those really simple moments. I learned a lot about posturing my heart from a place of gratitude instead of bitterness.”

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