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SK boy with rare disease dies
A young Port Orchard boy battling a rare and debilitating disease died Monday morning, a family friend reported.
South Kitsap resident Anne Quade said that Jaxon Abalahin, the 8-year-old adopted son of Port Orchard residents Paula and Oscar Abalahin, succumbed to his illness around 9:30 a.m. Oct. 6 at Mary Bridge Children’s Hospital.
“I was there last night, and we knew it was getting real close,” said Quade as she drove to the Tacoma hospital where Jaxon and his parents had been staying for the past few weeks.
“(Jaxon’s) parents have not left his side — they literally moved into the hospital,” she said. “They are the most amazing parents in the world.”
Jaxon suffered from a brain disease called Subacute Sclerosing Panencephilitis (SSPE), which Quade said was a result of the boy contracting measles when he was 7 months old, about a year before the Abalahins brought him home from the Phillipines.
“The seed had already been planted, because measles stays in the body, and it mutated into the SSPE,” Quade said, describing the disease as a progressive neurological deterioration that typically begins from two to 10 years after the measles infection, and is 95 percent fatal.
“He was perfectly healthy until he was five and a half,” she said. “He started kindergarten at Sunnyslope Elementary School, then all of a sudden starting having epileptic-like seizures.”
Soon, Jaxon was wheelchair-bound and completely dependent on his parents as he lost the ability to walk, talk and even swallow.
Quade said since Jaxon’s illness was so extremely rare in the United States, it was a difficult and lengthy process getting the right diagnosis. On the family’s Website, his parents recall that in “February of 2006, Jaxon began exhibiting symptoms typically associated with epilepsy, (and) the next four months were spent painfully watching Jaxon’s condition worsen as we searched for a diagnosis. Then in June we got the diagnosis (and) were devastated to learn that our precious little boy had contracted a rare and nearly always fatal disease.”
That fall, Jaxon was chosen by the Port Orchard Police Department as the first local child to be crowned their “Chief for a Day,” given his own uniform and the run of the POPD.
“We are hoping to provide a little relief for the Abalahin family with our efforts,” said Officer Trey Holden before the event.
At the time, Jaxon’s family was still clinging to the hope that they could find a cure, and went on to create a foundation dedicated to just that.
“The disease is so rare, no one is spending any money to find a cure,” Quade said. “We decided the only way to find a cure is to hire our own researcher.”
Quade said the family had made connections with doctors at the The Scripps Research Institute in La Jolla, Calif., and hopes to eventually raise the $150,000 needed to hire a researcher through the foundation.
After meeting with Lisa Marshall, the owner of Blondie’s restaurant, Quade said the group planned a fundraiser next month for the foundation, Jaxon’s Cure, a registered non-profit. Despite Jaxon’s recent passing, she said the fundraiser will go on as scheduled.
“The foundation will live on,” Quade said. “Our mission statement is real clear — we don’t think that any child should have to go through this. This is the worst complication from measles, and while we don’t take a stand on whether parents should be immunizing their children, they should be making informed decisions. People need to realize what can happen if they choose not to vaccinate their kids.”
Visit the foundation’s Web site at www.jaxonscure.org