Chehalis Girl’s Rare Kidney Disease Leads to Creation of Renal Alliance

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When Chris and Danielle Rovito discuss the journey that led them to co-found their foundation, they don’t need a script. For something as personal and profound as their story, it needs to come from the heart.

It started in April of 2021. Chris and Danielle’s now 3-year-old daughter Lawsyn, who was 2 at the time, wasn’t feeling well, and their family was about to leave for vacation.

“She just wasn’t acting herself,” Chris said.

Lawsyn’s belly was bloated and her eyes were puffy. The parents assumed she was constipated and that seasonal allergies were causing her face to swell. They tried over-the-counter medication.

“It was all gradual,” Danielle said. “Everything was really gradual. At one point, we were like, ‘Is she gaining weight?’ Is she eating too much?’”

This was the start of a monthslong journey that would culminate in a life-changing diagnosis.

After trying over-the-counter medication, the family brought Lawsyn to an urgent care clinic that prescribed Benadryl, also suspecting allergies to be the cause of her discomfort and swelling.

After the vacation, the parents took their daughter to their local pediatrician and heard the same thing.

At this point, Lawsyn’s entire body was swelling. The parents had to buy her new shoes that nearly a year later, she is just starting to fit into.

“She was a balloon,” Danielle said.

One morning, Chris got a call from their babysitter. Lawsyn had just woken up, and she was in pain, refusing to eat or go to the bathroom. The parents drove her to St. Peter Hospital in Olympia.

After urinalysis, nurses began a 45-minute ultrasound. Shortly after, an ER doctor comes in and hits the parents with: “We don’t need to start dialysis yet.”

Their hearts dropped into their stomachs.

“We came in here thinking allergies and now you’re saying that,” Chris said. “She’s like ‘it’s OK, it’s a very common childhood disease called Minimal Change (Disease).’”

St. Peter staff then refers the family to Seattle Children’s hospital and prescribes what Chris describes as a “massive amount of steroids.” They’re told Lawsyn should be better in six weeks.

Three weeks into treatment, she wasn’t improving, so they went to Seattle Children’s Hospital early. There, Lawsyn was prescribed a similar medication regimen. Again, she did not respond to the treatment.

So, the doctors decide to do a kidney biopsy. At that point, it was June. Danielle and Chris describe the events of that procedure day as “terrifying” and “traumatic.” Not only is Lawsyn their youngest baby, she’s also Chris’s only biological child in their six-member family. He calls his daughter his “30th birthday present.”

A few days later, they get a call with the diagnosis. She has focal segmental glomerulosclerosis (FSGS). It’s a rare kidney disease that affects the way the organs filter blood. Over time, this can cause sclerosis, or scarring, that can lead to kidney failure.

“I started digging in. I got into Google Scholar. I start looking, it’s like, ‘death, dialysis, life expectancy,’ I’m barely keeping it together,” Chris said.

Danielle added: “We spent that week just processing everything. I don’t know that we would have recovered if we didn’t.”



 

L.C. Renal Alliance

The Rovito family was staring down a life sentence dealing with Lawsyn’s disease. Her kidneys may be healthy for decades before she needs to replace them, depending on how well her medications work. Or, she may need a transplant next year. The medications she has to take may cause sterilization, among other side effects. Danielle and Chris decided then: they could wallow, or they could act.

Chris works for UPS and is part of the Teamsters union. Between his and his wife’s work, they had been able to focus on Lawsyn’s health when making medical decisions, rather than make sacrifices due to worries over insurance.

“Other parent(s) (are) worried about the medical bills that are going to come afterward, meeting their deductible, getting to their maximum out-of-pocket, not being able to afford the cafeteria, worried about missing too much work, getting fired,” Danielle said, adding later: “Then there’s your rent or your mortgage, your utilities and car payments. It’s a trickle effect. Chris looked up the statistics and the number one cause of homelessness was loss of job. Number two: unforeseen medical expenses.”

Through his work, Chris began recruiting coworkers to donate toward a kidney disease research charity. But the Rovitos didn’t just want to send money to kidney research, they wanted to help folks on the ground who were suffering alongside their sick children. So, they co-founded the L.C. Renal Alliance.

Through word-of-mouth fundraising and the recruitment of other Teamsters to donate a small portion of their salaries, the foundation has raised over $55,000 in less than six months, and the couple has not yet hosted an in-person fundraising event.

The biggest long-term goal they’ve set is to increase the number of dialysis clinics in the state. Washington residents currently can choose from clinics in Seattle, Spokane or Portland. Even adding just one clinic could cut drive times in half for many families. Lewis County, right between Portland and Seattle, would be a great place to start, they said.

For the short-term, they have already been using donations to assist families with gas cards, rental assistance and back pay for missed work. They are also fully-funding a family’s trip to a kidney disease conference in Florida and will partially fund the conference for a second family.

“We don't have all of the education or the background to be doing what we're doing, but we both have leadership qualities and motivational qualities, and we have skin in the game and we want to make it happen,” Danielle said.

Both parents still work full-time while they run the foundation with no employees. On Tuesday, they took the Eagles Aerie in Chehalis to present on their organization with the hopes of recruiting fundraising volunteers, whether for grant-writing or event planning. About a dozen people showed up.

Chris feels that America is undergoing a shift in culture where people crave more authenticity. He’s trying to keep every slice of authenticity in their foundation by sharing their story, and — while keeping full names private — the stories of the families the alliance is assisting. Visitors to the L.C. Renal Alliance Facebook page can read the accounts of different families the Rovitos have been helping, including the first names of their children.

Chris felt the organization’s greatest accomplishment yet was creating a network of families who could share their experiences. Without having a child with a rare kidney disease, he said, it’s nearly impossible to relate to other parents going through it.

When it comes to running an organization, he said, he’s sure tons of people are more qualified. But not when it comes to understanding the families.

“We built this from nothing and we built this from trust,” Chris said. “It’s about helping everybody else.”

Anyone interested in learning more about the L.C. Renal Alliance is encouraged to email the Rovito family at info@lcrenalalliance.org or visit their website at https://www.lcrenalalliance.org/. Donations can also be made on the website under the “donate” tab.