Daily Journal // November 29, 2021

Communities Rally Together for Indiana Family Facing Rare Medical Diagnosis

Published by Ryan Trares of Daily Journal. 

Chive Charities provided this family with a wheelchair-accessible van, and we didn't stop there. 

The generosity of strangers was overwhelming.

Over a span of six years, the Sawyer family’s lives had descended into a nightmare as their son, Jack, suffered from a mysterious disease. He developed painful rashes that sloughed away his skin, lost the ability to see and hear, and eventually control of his nervous system.

Though doctors had finally discovered Jack suffered from an incredibly rare genetic mutation that ate away his nerves, the family still faced financial insecurity in the face of treatment.

But with the help of the nonprofit Chive Charities, the Sawyer family has not only been thrown a lifeline, they’ve been given a chance to finally get their lives on stable footing. The organization purchased and delivered a new handicap accessible van to safely transport Jack to all of his doctor’s appointments and physical therapy.

“It’s like a dream come true. Things like this never happen to us — it happens to everyone else, but not us,” said Fay Sawyer, Jack’s mother.

The Chive Charities group also started a campaign to raise $25,000 — which will be matched by one of its partners, the digital technology company STRATACACHE — to help 11-year-old Jack, his twin brother Ethan, and his parents Fay and Chris Sawyer move into a new home of their own.

“We had to do more,” said Erika Carley, senior director of operations for Chive Charities.. “Jack is one of those stories that just inspired our community.”

In fact, it inspired the world.

Searching for answers

The rashes started to appear when Jack was just 3 years old. The little boy was suddenly stricken with red, itchy blotches that would cover him from head to toe. He looked like he had been scalded, Fay Sawyer recalled.

Jack’s skin would tighten and split, before peeling off. Soon, his hearing started to fail.

Then the neurological symptoms started presenting. He would lose strength and the ability to walk for a short time, then would get moderately better. Trips to doctors and hospitals offered no insight into what was wrong with him.

These cycles of maladies repeated themselves a few times a year over the course of six years.

“We’d be out of the hospital for a month, and then he’d start cycling through again with the rash,” Fay Sawyer said.

The ups and downs continued unrelentingly. The family went from hospital to hospital searching for answers, but no one knew anything. Doctors suggested it might be from malnutrition, or a genetic disease.

One asked the family about Munchausen by proxy — a mental illness in which someone acts as if an individual he or she is caring for has a physical or mental illness when the person is not really sick.

“We had, but that wasn’t what was happening here,” Fay Sawyer said. “Once they couldn’t figure it out, they told us they had exhausted all they could do and we’d have to go somewhere else. So my husband and I would have to find a new doctor.”

Fay Sawyer quit her job to care for Jack and Ethan full time, leaving the family with just Chris Sawyer’s income to support them. To save money, they moved into the home of Chris Sawyer’s parents.

Running out of options, the family took Jack in 2019 to Cincinnati Children’s Hospital Medical Center, an internationally known pediatric acute care hospital.

“When we got there, they asked us if we were just here for a second opinion,” Fay Sawyer said. “But I told them that I thought my son was really in trouble, I thought he was dying.”

First a doctor, then a team of neurologists examined Jack. They recommended medications, which had some effect on the disease and allowed them to further narrow what the disease was attacking. During treatment, Jack’s neurological function dipped even further, and he started screaming in pain. He couldn’t speak, move or eat.

“I looked at one doctor and just asked, ‘Is this it? Is this how he’s going to die, screaming?’” Fay Sawyer said.

The medical team prepared the Sawyer family to consider that Jack might not get better. Considerable damage had already been done to his brain and the rest of his body, and they weren’t certain where to go next to help him.

Still, Fay and Chris Sawyer weren’t ready to give up and pushed the hospital to continue. As a last-gasp effort, they sent Jack’s medical information and blood samples to National Institutes of Health’s Undiagnosed Disease Network, a research study to improve the level of diagnosis of rare and undiagnosed conditions.

Odds were very low that they’d find anything out. But they would try.

And for the first time since the whole ordeal started, they had a breakthrough.

“We got the call, and they told us, ‘We’ve got it,’” Fay Sawyer said.

Jack became just the third person in the world to be diagnosed with a mutation of the ACOX1 gene.

The mutation caused an inflammatory disease in which the body cannot produce antioxidants to break down free radicals that attack the nerves. Over the past six years, those free radicals had started eating away at the myelin sheath that protects Jack’s nerves and cells. That led to his neurological decline, and loss of his mobility and hearing.

“It’s a horrible disease. But what I like to tell people is, patient No. 1 passed away. Patient No. 2 was in a coma for two years. But Jack is recovering. And the kids who come after him will have a really good chance to beat this,” Fay Sawyer said.

To treat the disease, Jack receives antioxidants and multiple shots of an anti-inflammatory drug called Kineret. His condition has improved and stabilized, though he still has serious neurological damage.

Finding healing, hope

Finding answers opened up a new dimension of struggles.

Financially, they were being buried. The Kineret that Jack takes costs anywhere between $8,000 to $10,000 a month.

At the same time, they needed to find a way to get a handicap-accessible car. The Sawyers have a Roosevelt five-point car seat specially designed for children with special health care needs. Though the seat fit in their minivan, Fay and Chris Sawyer would have to lift him out of his wheelchair into the seat, then back out of the seat into the chair when they arrived at school or therapy.

Jack now weighs close to 100 pounds, and that isn’t feasible for much longer, Fay Sawyer said. Chris Sawyer already slipped two discs in his back carrying his son, and Fay Sawyer has injured herself getting him in, too.

They didn’t have the money for a modified handicap-accessible van, and were at a loss of what to do. Fay Sawyer remembered all of the times in the hospital when she’d been passing time on her phone, reading stories on the Chive about the people they’ve helped.

“I would look at those stories and think it was so nice,” she said. “So I thought I’d just ask about Jack’s story. The worst thing they’d do is say no.”

Chive Charities is a philanthropic arm of The Chive media company, which uses its reach and audience to primarily help those with rare medical diagnoses, first responders, and veterans and military families. The group averages about a grant per week around the world.

Since it was established, Chive Charities has used donations to purchase 143 handicap-accessible vehicles, done 126 home renovations, and purchased 820 pieces of medical and therapy equipment. Their assistance has totaled more than $17 million in aid.

“What’s so different about Chive Nation and our community, it’s not good enough for them to just meet the goal. They want to meet the goal, and then you see the donations just continue and continue and continue,” Carley said.

The Sawyers’ neurologist vouched for the group, and helped the family fill out the application. A few months later, they learned they had been accepted into the program.

Fay Sawyer thought the charity would offer them a way to raise funds and help them get the process started to purchase the van they needed. She was shocked when Chive Charities officials told them they would buy their van.

“We got on a Zoom call, and they told us they would send a link where we could pick the van we wanted, and they’d send it to us,” Fay Sawyer said. “I was confused — we weren’t going to fundraise or anything?”

Through the program, the family received a brand new accessible 2019 Dodge Grand Caravan.

“Everything is so much easier now, and Jack is so much more comfortable,” Fay Sawyer said.

The Chive Charities team, including executive director Brian Mercedes and Chive president John Resig, traveled to Greenwood to meet the family last month. While they were there, they learned more about the Sawyers’ situation.

Fay and Chris Sawyer are Jack’s main caregivers, and have adapted to moving him around the house they are currently living in. They take turns lifting him to the home’s lone bathtub, and carry him on a stretcher up and down stairs around the house.

Just as with the van, that’s not going to be possible much longer. The family had been trying to figure out a way to rent a one-story mobile home.

Chive Charities instead told them they were extending their assistance, tapping the massive network of donors to raise $25,000 to help them get into a one-story home. Their partner STRATACACHE vowed to match every dollar Chive Charities raised.

“In our campaigns, we launch the story about the recipient and connect the story to a third-party GoFundMe page, and we ask our community to support it,” Carley said. “Within hours, tens of thousands of dollars was raised.”

For the Sawyer family, the gesture was overwhelming. As word spread, the Johnson County community threw its support behind the fundraising as well. Teachers and staff at Pleasant Crossing Elementary School, where Jack is a student, asked if they could share the story and spread the fundraising link.

People from as far away as Italy have donated to the cause.

“We couldn’t believe this was really happening,” Fay Sawyer said. “Sometimes, you feel so alone. For people to cheer you on, all of these people are pushing for Jack, we think we can do this.”