LYNNWOOD, Wash. — The global computer outage that wreaked logistical havoc on hospitals, airports, businesses, and governments is having a life-and-death impact on one family.
Malachi and Maleea Castillote were scheduled for a brain infusion on Friday, a procedure they receive every two weeks. Their mother, Sabrina, received the first sign at 1 a.m. that something was wrong—a posting from Seattle Children’s Hospital that the network was down.
“I really didn’t think anything of it, I just thought, ‘Oh, it will be a chaotic day,” Sabrina recalled.
As the morning progressed so did the extending of the outage. Her children’s appointments were canceled, the first they would miss in five years.
In 2019, an end to a years-long mystery came. Malachi was successful in powerlifting and had plans to join the football team, but something in his body seemed to be taking steps backward.
When Malachi was 18, he was diagnosed with Batten’s Disease, CLN2 specifically, a genetic, hereditary, degenerative disease. It gave answers, but also came with a shock.
“You can think about it as the major brain diseases wrapped into one,” said their father Reiff Castillote, “he went from doing three-digit multiplication in his head faster than I could type it, tutoring other kids, now he can barely do one-digit multiplication.”
The siblings’ condition means their body does not create an enzyme that cleans cell waste from the body. The buildup of proteins and peptides affects nervous cells more acutely. Both Malachi and Maleea lost their fine motor skills and developed tremors, with Malachi going blind.
Earlier this year, Maleea developed the need for a wheelchair, three weeks later so did Malachi.
“We didn’t expect that for years,” Reiff said.
The brain infusions the two receive help clean the buildup in their brain. The process requires a timed sequence of medication, infusion, and recovery that can take up to ten hours to complete.
“We have some wiggle room before and after, but we have never missed an infusion. We know that there can be catastrophic effects of missing an infusion, abilities can be lost.” Sabrina said.
With go bags packed by the front door, they have been waiting for a call, not knowing if it will come.
“There is no other choice, right now our focus is quality of life and making sure right now the quality of their life is good,” Sabrina said.
Both parents have stopped their careers to become full-time caretakers for their kids and can be supported on GoFundMe: Their Hope To Live - Help Batten Fighting Siblings.
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