After rare diagnoses, Pasco family trying to focus on positive

Medical bills mounting as wife, 5-year-old son suffer from rare conditions

Herald staff writerMarch 31, 2013 

The Jonson family of Pasco was changed irrevocably two years ago when Sandy Jonson, 43, was diagnosed with neuromyelitis optica, a rare and terminal disease of the central nervous system.

Sandy’s husband Dave, 44, has spent those two years caring for his wife as she degenerated and became partially paralyzed. She takes 40 different medications three times each day at a cost of about $3,000 per month — and that’s after insurance pays a share.

The family’s fortunes took another turn for the worse about two months ago when 5-year-old Landon, one of the couple’s five children, collapsed after complaining about a tummy ache.

After a battery of tests, a doctor discovered during an exploratory surgery that Landon’s intestines and other internal organs were twisted and their blood supply had been cut off — a relatively rare medical condition that Landon had since birth, but only recently caused him problems.

“About 1 in 500 are born that way, but they very rarely have issues,” Dave Jonson told the Herald. “Somehow something happened and those organs got twisted up.”

Landon’s initial prognosis was only about a 5 percent to 10 percent chance of survival, although that was upgraded to 95 percent after five surgeries and weeks in the hospital.

“A nurse walks out of the operating room and ... is saying the best case is we have to take out all of your son’s intestines, bowels and colon, remove three-quarters of them,” he said.

Dave Jonson then was faced with the prospect of having to be in Seattle for weeks with his son — who might not make it — while leaving his terminally ill wife at home with no one to care for Landon’s 5-year-old twin brother. Sandy can’t walk. Her left arm is paralyzed and she has partial paralysis in her right arm.

“She is a person who was very active — active in the community. She always did everything for all the kids, all the kids’ friends,” Dave Jonson said. “Now she depends on me to eat, to administer medications. She can’t drive. She depends on me to get her to Seattle to see her doctors.”

When a Pasco preschool offered to donate child care for Landon’s brother, Dave Jonson was able to temporarily juggle the demands of caring for his wife and child, but now the preschool is closing.

And Dave Jonson is running out of available time off from his job at Bechtel, and he’s worried about losing his job altogether.

“Now here I am faced with being over here with no way to find or afford day care,” he said. “I’m having to go home with a son who will need full-time nursing care. I have a wife who needs care. No day care. No preschool. No income coming in.”

Friends hope the Tri-City community will help cover some of the family’s ongoing medical costs by donating to the Jonson Family Medical Fund at Chase Bank, a bank account set up by one of Dave Jonson’s colleagues.

Dave Jonson said anything would help, but in the meantime, he’s trying to focus on the positive.

“My wife being alive is a miracle. My son being alive is a miracle. Don’t ever take those blessings for granted,” he said.

Contact Dave Jonson at jaksdad3@yahoo.com

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