An April 26 and 27 event will raise funds for a foundation working to find a cure for a rare kidney condition.
The family of 11-year-old Keagan Turrubiates is joining with two other families to sponsor the fundraiser.
Turrubiates, the son of Jen Hildebrandt and Joey Turrubiates, was diagnosed with Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (or FSGS, a disease which affects kidney function) in November of 2007.
Five years ago, his family raised funds for the NephCure Foundation, which has a mission of supporting research to find the cause of the kidney condition while also improving treatment and finding a cure.
The fundraiser included a walk, and among those who went to it was Mary Uchytil, of Greenville.
Her 13-year-old son Marcus also has the kidney condition.
Last year, Uchytil and Sandy LeNoble, also of Greenville, teamed up to hold a fundraising walk.
LeNoble’s son, eighth grader Kyle DeGroot, has the condition as well.
This year, the three families decided to work together to raise money for the foundation.
“Sing and Stride” will be held Friday, April 26 in Waupaca and Saturday, April 27 in Greenville.
Hildebrandt said 100 percent of the money raised will go to NephCure Foundation.
Nephrotic Syndrome is a rare kidney condition in which the nephrons do not work properly, causing protein to leak out of the blood and into the urine.
When nephrons are healthy, they assist in keeping protein in the blood, which then maintains the proper balance of water in the blood.
When large amounts of protein leak into the urine, the amount of protein in the blood decreases, causing water to leak into the body tissue. As water accumulates in the tissue spaces, the skin looks puffy, which is called edema.
Hildebrandt said Keagan was in remission for three years.
In March of 2009, his pediatric nephrologist decided to take a different approach as to how they treated the condition due to Keagan’s constant relapses, she said.
His doctor decided to keep him on his current medications while also adding a chemo drug, with the hope it would put Keagan in remission for two years, if not the rest of his life, Hildebrandt said.
“He remained in remission a little over three years,” she said. “He considered himself normal. Joey and I, as parents, felt we were out of the woods.”
However, late last June, Keagan woke up with a puffy face again.
“The lifetime of remission had disappeared,” Hildebrandt said.
Tests confirmed he was in a relapse for the first time in three years.
Prednisone and Zantex were prescribed, and within two weeks, he responded to the steroid. The weaning process began.
He relapsed again last October and has now been off the medications since late December.
In addition to the mediations, Keagan has a strict diet. He may only have 1,000 to 1,500 milligrams of sodium a day, and his fluids are restricted.
While he has responded to the steroids, the chance of Nephrotic Syndrome reoccurring is likely.
After meeting the families of two other boys who have the kidney condition, the three families decided to have a two-day event, with part of it in each community.
On Friday, April 26, “Karaoke for A Kure” and the music of the local band Silenze will take place at D’Fuego’s and the Best Western Plus Grand Seasons Hotel in Waupaca.
It will kick off at 7 p.m. with the silent auction and band, in the hotel’s lower level banquet room.
Hildebrandt said the karaoke will take place from 9:30 p.m. to midnight in D’Fuego’s, with a free will offering.
There is no admission charge.
However, those who give a donation of $15 per person or $25 per couple will then receive light snacks and refreshments.
Hildebrandt said silent auction items include a Green Bay Packers autographed football (includes autographs of Donald Driver and Greg Jennings); tickets to musicals, Country USA, Milwaukee Bucks and Milwaukee Brewers games; a girl’s mountain bike; handmade quilts; and a twin Restonic mattress and box spring.
The Saturday, April 27 activities will take place at Greenville Lions Park.
Registration for the approximately two-mile walk will begin at 9 a.m., with the walk beginning at 10 a.m.
There will also be breakfast and lunch concessions, a silent auction, bucket raffles and activities for children.
Hildebrandt said walkers may get pledges for the NephCure Step Forward Walkathon and may register or donate online for it at www.nephcure.org by clicking on “Get involved.”
Hildebrandt said their goal is to raise awareness and research funds.
“How excited we are that there are three families working together,” she said. “Come and have fun.”