Fundraiser shows need for kidney disease research

For Melissa Naquin, the importance of trying to find a cure to chronic kidney disease is all too real as doctors try to save the kidney she donated to her 13-year-old daughter, Alyse.

Naquin, who lives in Lafayette, attended NephCure Kidney International’s inaugural Boogie on the Bayou fundraiser Saturday at Gros’ Marina in support of her daughter.

NephCure is a nonprofit dedicated to accelerating research for effective treatments for rare forms of nephrotic syndrome and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases, according to its website.

Donna Phenald, NephCure’s community fundraising coordinator in Louisiana, is a cousin of Leroy Gros, who owns Gros’ Marina. Lt. Gov. Billy Nungesser served as honorary chairman of this year’s event. Organizers sold food, had live and silent auctions, and Ryan Foret & Foret Tradition performed during the benefit.

Nephrotic syndrome is not a disease itself, but rather a set of signs and symptoms that result from damage in the kidney’s filtering, the organization says. A properly functioning kidney filters waste and toxins from the blood.

Naquin is headed to New Orleans this week to try to determine how to save the kidney she gave her daughter, Alyse, in December 2018.

“Without us raising money, none of these cures can be found. None of these studies can be performed,” Naquin said.

Alyse was diagnosed in May 2017 with nephrotic syndrome and focal segmental glomerulosclerosis, known as FSGS, a cause of nephrotic syndrome. FSGS attacks the kidney’s filtering units causing serious scarring, which leads to permanent kidney damage and even failure, according to NephCure.

Her disease quickly progressed, and Alyse went through peritoneal dialysis. A month after Alyse’s kidney transplant, the disease reoccurred with the new kidney.

Naquin stayed with her daughter in New Orleans trying to reverse the disease without any progress. On May 1, Alyse went to Delaware to begin a clinical trial in which NephCure is involved.

Last week, the family found out that the clinical trial was unsuccessful for Alyse, who was the only trial participant that didn’t go into remission.

“But because of NephCure, there are other things that we can try,” Naquin said.

The family is going back to New Orleans to try to determine what to do next to save the transplanted kidney.

NephCure is pushing to create a bionic kidney that Naquin says would probably be Alyse’s best option. Her disease could not attack a bionic kidney unlike it can with a regular kidney, Melissa Naquin said.

A bionic kidney is as small as a pacemaker and can do the functions of a kidney. Individuals with bionic kidneys would be able to live the rest of their lives without needing dialysis, she said.

Nathan Roy, 33, of Baton Rouge, was diagnosed with FSGS when he was 12 years old, and his father learned about NephCure shortly after the organization started. For many years, Roy didn’t want to talk about the disease. But in recent years, he’s decided to be more open about his story and proactive in supporting efforts to find a cure.

About 9,000 people in the United States are diagnosed with these rare chronic kidney diseases each year, and more than half are children, Roy said.

“The defining moment with me getting involved was seeing a child that should’ve been in kindergarten on dialysis from this disease,” he said.

Roy has had three kidney transplants and the disease came back each time. He’s spent about 16 years on dialysis and has dialysis every Monday, Wednesday and Friday. He’s able to work part-time on Tuesdays and Thursdays and spends many of his weekends volunteering for NephCure.

Another fundraiser attendee with chronic kidney disease was Lane Bordelon, 14, of White Castle. He was diagnosed with nephrotic syndrome at age 3. He was on steroids for a couple of years until doctors found the right medicine to keep him in remission. He stayed in remission for five years before he relapsed, his mother, Christina Bordelon, said.

A new doctor then diagnosed Lane with FSGS and his family learned about NephCure. But another doctor later determined that Lane didn’t have FSGS and had minimal change disease, the most common cause of nephrotic syndrome in children where there’s little or no change to the kidney’s filtering units and no kidney scarring, NephCure’s website says.

Even though Lane didn’t have FSGS, his family has continued to support NephCure, because “FSGS is an absolutely horrible disease,” his mother said.

To learn more about nephrotic syndrome, FSGS and NephCure Kidney International, visit nephcure.org.