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

By Isabel Vander Stoep / [email protected]

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

It all started in April 2021. Chris and Danielle’s now 3-year-old daughter Lawsyn, who was 2 at the time, was not feeling well and their family was about to go on vacation.

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

Lawsyn’s stomach was swollen and his eyes were puffy. Parents speculated that she was constipated and that seasonal allergies caused her face to swell. They tried over-the-counter drugs.

“It’s all been gradual,” Danielle said. “Everything was really progressive. At one point, we were like, “Is she gaining weight? Does she eat too much?

It was the start of a month-long journey that would culminate in a life-changing diagnosis.

After trying over-the-counter medications, the family took Lawsyn to an urgent care clinic who prescribed him Benadryl, also suspecting that allergies were the cause of his discomfort and swelling.

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

At this point, Lawsyn’s whole body was swelling. The parents had to buy her new shoes in which, almost a year later, she is just beginning to fit in.

“She was a ball,” 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 took her to Saint-Pierre hospital in Olympia.

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

Their hearts were falling in their stomachs.

“We came here thinking about allergies and now you’re saying this,” Chris said. “She’s like ‘it’s okay, it’s a very common childhood disease called minimal change (disease)’.”

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

After three weeks of treatment, she wasn’t improving, so they went to Seattle Children’s Hospital early. There, Lawsyn was prescribed a similar drug regimen. Again, she did not respond to treatment.

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

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

“I started digging. I got into Google Scholar. I start searching, it’s like ‘death, dialysis, life expectancy’, I can barely hold on,” said said Chris.

Danielle added: “We spent this week processing everything. I don’t know if we would have recovered if we hadn’t.

LC Renal Alliance

The Rovito family were considering a life sentence related to Lawsyn’s illness. Her kidneys may be healthy for decades before she needs to have them replaced, depending on how well her medications are working. Or, she may need a transplant next year. The medications she has to take can lead to sterilization, among other side effects. Danielle and Chris then decided: 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 making sacrifices due to insurance concerns.

“Other parents (are) worried about the medical bills that are going to come down the road, respecting their deductible, their maximum disbursements, not being able to afford the cafeteria, worried about missing too much work, getting fired,” Danielle said, later adding, “Then there’s your rent or your mortgage, your utilities and your car payments. It’s a trickle down effect. Chris looked at the stats and the number one cause of the Homelessness was job loss Number two: unexpected medical expenses.

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

Through word of mouth and recruiting other Teamsters to donate a small portion of their salary, the foundation has raised more than $55,000 in less than six months, and the couple have yet to organize in-person fundraising event.

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

In the short term, they have already used donations to help families with gas cards, rent assistance and back pay for missed work. They also fully fund one 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 the education or experience to do what we do, but we both have leadership qualities and motivational qualities, and we have skin in the game and we want to happen,” Danielle said. .

Both parents still work full-time while running the foundation without employees. On Tuesday, they took Eagles Aerie to Chehalis to showcase their organization in hopes of recruiting volunteers for fundraising, whether it’s grant writing or event planning. About ten people showed up.

Chris thinks America is going through a cultural shift where people are looking for more authenticity. He tries to keep each slice of authenticity in their foundation by sharing their story and, while keeping the full names private, the stories of the families the alliance helps. Visitors to the LC Renal Alliance Facebook page can read stories of different families the Rovitos have helped, including the names of their children.

According to Chris, the biggest achievement of the organization was to create 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 says, there are sure to be tons of people who are more qualified. But not when it comes to understanding families.

“We built this from scratch and we built it from trust,” Chris said. “It’s about helping everyone.”

Anyone interested in learning more about the LC Renal Alliance is invited to email the Rovito family at [email protected] or visit their website at Donations can also be made on the website under the “donate” tab.