VUHS Honor Society members battle kidney disease for area mom
VERGENNES — This winter the Vergennes Union High School chapter of the National Honor Society has focused much of its community service efforts on raising funds for the Polycystic Kidney Disease Foundation.
The linchpin of that effort has been the pledge of two society members, Nate Rowell and Max Ratti-Bicknell, to take on the Polar Bear Obstacle Challenge at Benson’s Shale Hill Adventure, which hosts a number of daunting obstacle-course marathon-style events. (See related story here.)
Inspiring the group’s idea to target funding for research on polycystic kidney disease, or PKD, is the story of honor society member Hailey Cray’s mother, Dana Cray of Addison.
Dana Cray is one of the roughly 600,000 U.S. residents who are PKD patients, a number that Hailey Cray correctly notes is roughly equal to those who are affected by muscular dystrophy, cystic fibrosis, hemophilia, Down syndrome and sickle cell anemia — combined.
At the same time, Hailey Cray said, although the disease can have serious complications and, according to kidney.org, is the fourth-leading cause of kidney failure and responsible for 5 percent of all U.S. kidney transplants, little research is being done.
“I was really shocked when I looked into it,” Cray said. “The PKD Foundation raised, in seven years, less than $180,000 for research, which doesn’t fund anything.”
According to mayoclinic.org and kidney.org, PKD causes fluid-filled cysts to grow in kidneys. If too many cysts grow, or if they get too big, kidneys can become damaged or even become slowly replaced by the cysts, reducing kidney function and even leading to kidney failure.
Symptoms typically do not surface until between the ages of 30 and 40, and initial effects can include back or side pain, increased size of the abdomen, blood in the urine, bladder and kidney infections, and high blood pressure, the single most common symptom. Ultrasounds are the most reliable way to detect PKD, which can also affect other organs, most typically the liver.
Treatment is largely diet related, although Dana Cray is part of an experimental program at the Mayo Clinic, Hailey Cray said. The diet is restrictive, especially for pre-menopausal women, who are asked to avoid meat, dairy products and tomatoes, according to Hailey Cray.
“If you followed it religiously, you really wouldn’t be able to eat much at all,” she said.
The effect of the disease varies from patient to patient. Hailey Cray said that at least for now, her mother is doing OK.
“She bears it well, and she likes to say she doesn’t have it as badly as so many people in the world do,” Cray said.
Infants born with PKD don’t typically fare as well, Cray said, often not surviving the ordeal.
“When they’re that little and their kidneys fail, it’s really tough for them to be on dialysis,” Cray said. “It’s tough for those families that have young kids.”
The other surprise for honor society members as they began their fundraising effort — which to date has reached more than two-thirds of its $6,000 goal — was learning that other members of the greater Vergennes area had also been touched by PKD.
“It’s amazing, when we started handing out letters and talking to people, we ended up meeting a lot of people in our community who had it we didn’t even know,” Cray said.
PKD has a genetic component, and Hailey Cray has more than her mother to be concerned about — but the future does offer some hope.
“I have a 50-50 shot,” she said. “My mom’s nephrologist said by the time it’s going to be affecting me, where I’m at the stage where I’m going to be really needing a treatment, should I have it, there will probably be something. With the 3-D technology about 3-D printing of organs, it will be easier and easier to get a transplant.”
Her friend Nate Rowell said he and the other members of the VUHS honor society didn’t take too much convincing to take up the cause.
“As we started to talk more and more about it, it became a logical choice that we needed to start publicizing this,” Rowell said. “And that’s exactly what we did.”
Andy Kirkaldy may be reached at [email protected].