Ryan Worthington, the 3-year-old Walnut boy who suffered from Hurler's syndrome, a rare metabolic disease, has died in Minneapolis, his family said.
"God wanted him back," said his mother, Tracy Worthington. She said the boy was taken off a ventilator system at the University of Minnesota's Children's Hospital and died at 8:52 p.m. Sunday.
Ryan had undergone bone marrow transplants at the hospital in August of last year and in January. He also endured chemotherapy, weathered infections and fought organ damage.
During the course of his struggle with the disease, which is genetically transmitted, thousands of people responded to his parents' campaign, donating blood and money through colleges, churches and other programs. After the National Marrow Donor Program found one man out of thousands whose blood type matched Ryan's, the man donated marrow for both of the boy's operations.
Although the toll upon Ryan's body eventually proved too much, his spirit stayed strong, said his father, Robert Worthington.
"He continued to fight till the end, till the last day," Worthington said Tuesday, a day after arriving from Minnesota.
Despite numbing drugs, intravenous needles and tubes in his mouth and throat that robbed him of speech, Ryan "always tried to let us know he was still in there," said Jane Kasel, a family friend from Moorpark who had recently visited the youngster in Minnesota.
When she spoke to him, Kasel said, Ryan would squeeze her hand. When she bottle-fed him and praised him, he sucked harder on the bottle. When nurses cleaned out his mouth with a tube, he would playfully bite down on it as if he was reluctant to let it go, she said.
"He always tried to please everyone around him," Kasel said. "There wasn't anybody who didn't love him."
Nurses would often visit him when they were off-duty, and doctors were amazed at how well he endured the whole process, the family friend said.
"(Children) usually wither away from spending so much time in the hospital," she said. "But he wasn't withered away."
Funeral services are scheduled for 2 p.m. today at Christ Church of the Valley, at 710 N. Lark Ellen Ave., West Covina. Donations to help defray the family's costs can be sent to P.O. Box 1806, Walnut, CA 91788-1806.
Robert Worthington said the family is requesting that people also donate games, puzzles and videos to ill or needy boys, because Ryan had loved to play with such toys.
"I told him goodby for now, but not forever," Worthington said. "I would tell parents to enjoy and cherish every moment they have with their children. I know me and my wife did. We have no regrets."