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April 13, 2021

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Their daughters’ rare disease brought two dads together. Now they’re fighting for early genetic testing in Washington

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The two fathers had never met in person, but that didn’t matter. They knew each other well. The confusion, the worry, the frustration of being the father of a child who grows and learns and then, suddenly, regresses.

The vocabulary stalls. The seizures start, along with the vision problems. There are outbursts of anger. One daughter started to eat dirt.

Mike Jackson lucked out; he and his wife, Corin, found a neurologist who saw that their daughter, Evelyn, was missing developmental markers and suggested a free genetic test that could provide some answers.

It did: Evelyn was diagnosed with Batten Disease, a fatal inherited disorder that affects between two and four of every 100,000 people living in the United States.

John Barclay and his wife, Courtney, weren’t so lucky. They waited three years for the same genetic test for their daughter, River, that would cost $25,000 they didn’t have. After consulting with two neurologists and pleading with several insurance companies, River was finally tested in 2016.

She, too, had Batten Disease.

But by then, her disease was too far along, causing seizures that finally took her life in 2019. She was two months shy of 10 years old.

John Barclay and Mike Jackson met on a Facebook page for families impacted by Batten Disease. It’s not big; maybe 200 people worldwide. So, being in the same state, Jackson and Barclay forged a friendship that has brought not only comfort, but purpose.

Together, the two men have drafted a bill that would require insurance companies pay for genetic testing for children who aren’t meeting certain developmental markers.

Jackson, 37, of Auburn, remembered being in California, where his daughter was having a medical infusion, and getting a text from Barclay.

He had an idea for a state law that would make genetic testing immediately available and covered by insurance when children are missing developmental milestones, and presenting unexplainable conditions affecting their health.

“I’m all in,” Jackson told him. “I’m on board.”

House Bill 1363 — Evelyn’s Law — would cover testing for all diseases, and not just the one that affected their daughters.

“If kids are having seizures, insurance should cover the testing for all diseases,” said Jackson, an infrastructure chief engineer for Amazon Web Services. “There’s a need for everybody. Not just our kids.”

Barclay, 48, an IT worker who lives in Aberdeen, has worked on legislation before, and had a connection to House Majority Leader Pat Sullivan, D-47th, whom he asked to submit the bill to the Legislature.

Sullivan did that, despite the fact that he doesn’t normally sponsor a lot of health care bills.

“I found it compelling,” Sullivan said. “I’m a father myself. Having a child who is struggling and you’re not sure what it is and there’s testing available but you can’t move forward? It’s just horrible.”

But with so much of the state’s focus and funding on COVID-19, the bill won’t get anywhere this session. And Sullivan wants to rework the “fiscal note” of the bill over the interim.

“I’m told it would be very expensive,” he said. “But I will talk to the [committee] chair next year and see what we can do. There has to be some solution. Something’s got to be done.”

Barclay and his wife have two other children. River had blond hair, green eyes, a graceful, gymnastic physique and was “brilliant,” he said.

“She just excelled in everything, ahead of her class, which was the hardest part,” he said. “The disease just interfered with her trajectory.”

She didn’t show any signs of disease until she was 4, when she started having seizures. They thought it was epilepsy.

“She was in second grade, singing and dancing on stage as best she could, and then it became too much.” She required a medication that wasn’t allowed on her school campus, so they kept her at home.

At one point, she was having three seizures a day. To comfort her, Barclay would talk about her friends, “and Evelyn was one we would talk about.”

After River died, and her birthday approached, “I realized that if I didn’t do something, I was going to hit bottom,” Barclay said. He donated River’s medical devices to other children. And he started getting mad.

“If she had been diagnosed at 4, she could have gotten on the trial,” he said. “She missed that whole thing.”

If passed, the bill would pay for itself in fewer ambulance rides and emergency room visits, doctor’s appointments and additional social resources.

“You can’t even put a number on it,” Barclay said.

Evelyn Jackson, who is now 5, was “a normal, happy, healthy kid” for the first two years of her life. Then she seemed to stop developing mentally.

“She wasn’t learning new words,” Jackson said. “She seemed like the same child she was six months before. Something seemed off.”

She also developed sensory issues. She became overwhelmed in public and couldn’t be in crowds. Other times, she was “sensory seeking,” her father said, turning violent, pushing other children and banging things to make noise.

They thought she had autism — and then the seizures started. A neurologist ordered an electroencephalogram, which came back “very abnormal,” Jackson remembered.

He recommended Evelyn be tested through a no-cost program called Behind the Seizure.

Over the last year, and after seeing therapists, she has made a lot of progress. Corin Jackson, 36, cares for her full-time.

“It’s not a cure,” Jackson said, “But the earlier they start children on it, the better they’re doing. In some cases, it’s halting the progression of the disease.”

The two men had only talked over the phone and via Zoom, until they met at the state Capitol in Olympia for the photo shoot for this story.

“I’m gonna hug him out of his shoes, even though he is 6 feet taller than me,” Barclay said before meeting Jackson in person. “It’s not a partnership, it’s a friendship, it’s a quest to do something that’s good.”

Said Barclay: “It’s more than a friendship for me. And it’s very rare for a bill to pass on the first go. But even if it doesn’t, it is still this journey to get this done.”

The bill has been submitted to the health care and wellness committee.

“The more public support that a bill has, the more interaction the community has, the more the legislators are going to move on it,” Barclay said.

They know they are up against the costs of COVID-19.

“In the scheme of illnesses, it’s a tiny little match flame compared to the wildfire of COVID,” Jackson said. “But it’s necessary, because it’s still burning. And the sooner you can catch it, the fewer kids will slip through the cracks and suffer.”

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