Cailen Vela, 7-year-old with rare cancer who CNN profiled last year, has died

By MJ Lee, CNN

(CNN) — Cailen Vela of Fruitport, Michigan, died Tuesday after fighting cancer for three years, his family announced. He was seven years old.

“Cancer never defined him; his joy, strength, and light are how he will be remembered. No matter what Cailen was facing, he showed up smiling,” Vela’s obituary said. “Running around, laughing loudly, loving deeply, and living every single moment to the absolute fullest. Cailen loved adventure, including a whale watching trip to California, countless camping trips, multiple kid-camps, hanging out with his many friends, always wanting to go on a bear hunt, and always wanting his ‘crazy sister’ by his side.”

CNN reported last year on Cailen’s diagnosis of a rare and aggressive form of cancer called embryonal rhabdomyosarcoma, including his relapse after initial treatment. The cancer was discovered after a routine visit to the pediatrician, when doctors thought Cailen might have an ear infection.

Cailen’s parents, Aly and Cody, shared the anxiety they felt about the Trump administration’s then-proposed cuts to funding distributed by the National Institutes of Health. “If the funding got eliminated or cut that would be devastating, because these kids definitely need help in research,” Aly Vela told CNN at the time. “All the help — because there’s no real answers.”

A KFF Health News analysis found that the NIH’s sweeping cuts of grants that fund scientific research have inflicted pain across the country.

Cailen’s funeral is on May 16. His parents encouraged everyone to “come dressed in Cailen’s favorite things, including the Tigers, orange and yellow, Spiderman, Minecraft, Super Mario, How to Train Your Dragon and Disney.”

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