Yampa family looks for help after losing son to rare disease, car crash
Yampa — Jayden Marty King would have turned 6 last Monday. For the first few years of his life, he was just another little boy, playing with his siblings in the yard and enjoying the simplicity of childhood.
Then, as he was pushing 3, his health began to deteriorate.
“He was normal. He crawled, he walked,” said Marti King, Jayden’s mother. “He went totally in reverse. He stopped talking. He was having a bunch of seizures. We couldn’t control him. The last two years have been complete hell, basically. He just kept getting worse and worse.”
The King family, from Yampa, said goodbye to Jayden the afternoon of Sept. 22; his memorial service was held Oct. 24, just two days before his birthday. Jayden died from Batten disease, a genetic disorder that predominantly affects the brain. Both his parents, Marti and Lary, were unknowingly carriers of the rare disease.
According to the National Institute of Neurological Disorders and Stroke, the disease occurs “in an estimated two to four of every 100,000 live births in the United States” and even more commonly in parts of northern Europe.
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The condition is so uncommon, especially in this part of the country, that Jayden’s doctors only diagnosed him with Batten disease a couple of weeks before his death.
“He went from walking to crawling to, in three months, lying in a bed and a wheelchair and could do nothing,” Marti said. “We obviously weren’t expecting to find what we found.”
Amid the trauma surrounding Jayden’s illness, a car crash burdened the family even further. The evening of Aug. 14 — on their way back from Denver where Jayden was still in the ICU prior to being moved into hospice care — Marti fell asleep at the wheel just outside Granby with her husband and other three children in the car.
Their 1996 Subaru Legacy was totaled when the car drifted off the road at near 90 miles per hour, went up a small hill and rolled back across the highway. The children, Jace, 10, Kodie, 8, and Savanna, 4, came away with little more than cuts and bruises. But both Marti and Lary ended up back in the hospital and have been in back and/or neck braces since.
“My spleen was ruptured; the blood vessel running through my pancreas was ruptured,” said Lary, who also sustained a pair of crushed vertebrae.
“He stayed in the hospital for two weeks while I got rides back and forth,” Marti said. “Considering all the flying and flipping we did, (the kids) came out awesome.”
Then, the day of Jayden’s death, Lary hopped in a vehicle borrowed from his stepson and was headed to Denver after learning of his son’s passing. Only 20 miles from home, just after he had taken his medication before bed, Lary fell asleep and crashed the vehicle near Toponas, breaking numerous ribs to add to his previous injuries.
Longterm, both Lary and Marti should be fine and hope to be rid of their braces in mid-November. Despite the absence of Jayden, the children are also coping well. However, the family now finds itself financially burdened and without a vehicle.
Only a few months ago, Jayden was getting ready for kindergarten. Now, the family is trying to wake up from their nightmare.
“We are just ready to go on,” Marti said. “He had touched a lot of people’s lives. So we had more than 30 people at his memorial service. And myself, I think that’s pretty amazing to be 5 and touch that many people’s lives. So I feel most grateful that he chose us for his five years of life.”
Thankfully for the family, none of the surviving children have shown any indications of the disease that claimed their brother. Batten disease can often impact multiple members of the same family, and symptoms might not appear until age 10. Jace, Kodie and Savanna are being tested for the disease, but the blood work takes months.
“Right now, we are waiting,” Marti said. “We are crossing our fingers, saying these guys aren’t behaving like he was, but it still could hit. It’s kind of nerve-wracking until we get the blood thing back.”
The family is very thankful for the support of the South Routt community, which has started a Go Fund Me page at which people can donate money. Their only source of income comes from Lary’s disability; he spent most of his life as a heavy equipment mechanic before injuring his back about four years ago. Marti had been a stay-at-home mom, with Lary’s disability and Jayden’s illness requiring around-the-clock attention.
Their current income helps pay basic living costs, but little else. And without an operable vehicle, even buying groceries is more burdensome than it should be.
“We are just grateful he is not suffering anymore,” Marti said of Jayden.
To donate to the family, visit the Go Fund Me page at gofundme.com/t83eeqf8.
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