WOODBINE – Last Thanksgiving, Khloe Sudol, 10, of Woodbine, was experiencing a cough, headache, and other symptoms, which doctors thought might be bronchitis or a sinus infection.
When her health conditions worsened, a trip to the emergency room was the beginning of what her mother, Heather, calls a “nightmare.”
This Thanksgiving, the youngster is hoping for a kidney transplant, having been diagnosed with a rare genetic disease that destroyed her kidneys.
In the meantime, she undergoes eight hours of dialysis each night to keep her body free from wastes that her kidneys can no longer filter.
“That trip was the beginning of the worst week of my entire life,” Heather Sudol said. “Blood showed up in Khloe’s urine and further testing showed her kidneys were shutting down; they were destroyed. It was such a shock because we had no idea and, all of a sudden, she had to be undergoing emergency chemo every day to bring down her creatinine levels, a waste product produced by your muscles.”
It was four or five days before they received a diagnosis, the mother of three recalled. Her daughter has a rare genetic disease called aHUS (atypical hemolytic uremic syndrome).
According to the American Kidney Fund (AKF), aHUS is a rare disease that causes too many blood clots to form in blood vessels (https://bit.ly/319xlio). Because these clots block regular blood flow to the kidneys, the kidneys are not able to get rid of the waste in the body as well as they should. Over time, the kidneys become damaged, which can lead to kidney failure.
It affects two in one million people in the U.S. Sudol said she is not aware of anyone else in her family who has the disease.
Besides the nightly dialysis, Khloe Sudol visits a Philadelphia hospital every eight weeks for an infusion of eculizumab, a chemotherapy drug that aims to keep aHUS from returning. Her mother said, “The disease is in remission, but the kidney damage is done.”
To minimize the risk of rejection, anyone considering donating a kidney to Sudol must have Type A or Type O blood. Sudol is Type A-positive. There are other qualifications, as well, which can be found on AKF’s website (https://bit.ly/35aTYo2). Anyone interested should call Sudol’s mother, at 609-408-0028.
In the meantime, Sudol spends her day as any normal 10-year-old. She attends virtual classes, as an Upper Township fifth grader, loves to ride horses, draw, and create videos.
Her drawing skills helped her win the AKF’s annual national Calendar Kids Art Contest. Her artwork, “Kidney & Flowers,” will appear on the cover of AKF’s 2021 calendar. She was a special guest at the AKF’s national gala Oct. 7, which took place virtually this year due to COVID-19.
AKF sent her a package of items from Washington, D.C., where the event usually takes place, which included a D.C. t-shirt and trinkets, such as pencils, pens, water bottle, playing cards, and coloring postcards to mail.
Sudol was one of 13 pediatric kidney patient finalists vying to have their artwork appear on the calendar’s cover. Each child’s artwork was posted to AKF’s website to be voted on by the public, and thousands of people across the nation cast their votes to help AKF choose the winner.
Sudol’s artwork included a poignant message, alluding to the shortage of donor organs: “If only kidneys could grow like flowers.”
“I’m excited that my painting got chosen,” Sudol said. “I hope my painting will bring hope to other kids who are going through the same thing as me.”
After the initial diagnosis, Sudol’s mother said her daughter suffered from depression and post-traumatic stress from visiting the hospital so often. Sudol tries not to dwell on her sickness and is doing better.
She learned about the art contest through her dialysis nurses and completed the painting while quarantining at home. She said she admires the beauty found in nature, especially flowers, because, while they are all different, they are each beautiful in their own way. Her painting symbolizes the differences between her and other kids with chronic kidney disease that make them beautiful.
“We are thrilled to be part of this contest and extremely grateful that Khloe’s artwork received the most votes,” Sudol’s mother said. “Khloe is very creative and was excited to brainstorm ideas for the painting with her dialysis nurse.”
AKF’s 2021 calendar, featuring Sudol’s winning artwork, will be published later in October and available for purchase on AKF’s website. Each of the finalists will receive a canvas-wrapped print of their artwork, along with a gift card.
“Khloe’s painting is inspiring to us all and serves as an important reminder that more than 90,000 people in this country are on the waiting list for a kidney transplant,” said LaVarne Burton, president and chief executive officer of AKF.
The contest provides AKF with an opportunity to increase awareness of kidney disease throughout the U.S.
To contact Karen Knight, email kknight@cmcherald.com.
