Archdale youth attends Kidney Patient Summit in Washington, D.C.
He may only be 6 years old, but Archdale’s Duncan Sykes made a big impression on folks in Washington, D.C., earlier this month.
Duncan and his mother, Amber Sykes, were selected to be kidney patient advocates at the annual Kidney Patient Summit, which was held March 3-5 in Washington to increase awareness and support for the nation’s kidney patients.
“He loved it,” Amber says. “He kept saying, ‘Mama, I don’t wanna leave Washington — they all love me here.’”
Duncan and his mom gathered with more than 50 other kidney patients and caregivers from across the country to share their stories with members of Congress and emphasize the importance of kidney disease awareness and education. They were chosen for the opportunity by submitting an application to the National Kidney Foundation.
“I just thought it would be neat to go to Washington and share Duncan’s story,” Amber says.
Duncan has focal segmental glomerulosclerosis, a kidney disorder caused by scar tissue in the kidneys.
“Basically, his kidneys are not filtering properly, and he’s going to need a kidney transplant,” Amber explains. “He’s not on the transplant list yet, but he’ll be put on there when his kidney function is at 20 percent. Right now it’s about 35 percent.”
And until a new kidney becomes available, Duncan also faces the possibility of having to go on dialysis.
According to Amber, Duncan’s kidney problems began in December 2010, not long before his third birthday, after he had experienced some severe swelling in his body, a common symptom of kidney disease. His pediatrician conducted blood and urine tests and referred him immediately to Wake Forest Baptist Medical Center in Winston-Salem. Doctors there said he had nephrotic syndrome — a condition that can damage the kidneys — but they thought he would grow out of it.
He didn’t grow out of it. He continued having problems with swelling — at one point, he gained 24 pounds of fluid in a week’s time. Medicine typically reduced the swelling, but Duncan kept having relapses.
Finally, in November 2011, a kidney biopsy showed he had focal segmental glomerulosclerosis.
“They’ve put him on transplant medications,” Amber says. “They do that to trick his body into thinking he has already had a transplant, to see if it will slow down the swelling process, but eventually he’s going to need the kidney transplant.”
Amber and Duncan’s father, Wesley Sykes, try to give their son as normal a life as possible. He’s in kindergarten at Archdale Elementary School, but he misses quite a few days when he’s sick or going to the hospital for medical appointments.
He also plays sports, but he tires easily.
“We just make his coaches aware, so they’ll know to take him out of the game if necessary,” Amber explains. “You can tell when he’s getting worn out.”
Duncan doesn’t know the full depth of his kidney disorder, only that he’s sick and that he’s going to need a kidney transplant.
That’s what he told members of Congress earlier this month at the Kidney Patient Summit, where he was the youngest of the kidney patient advocates. During the summit, he was also chosen to be one of four faces of the National Kidney Foundation’s Kidney Patient Summit, meaning his story will be used in some of the foundation’s promotional materials.
Duncan also got to do some sightseeing while he was in Washington.
“It was a great experience for him,” Amber says. “He just had a great time and didn’t want to leave.”
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