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HOLDING TIGHT TO HOPE
10-year-old with Stage 5 kidney disease has just one Christmas wish: A kidney
Winston-Salem Journal - 12/25/2017
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Of all the sought-after gifts on the market, the only thing on Kenley Bullins' Christmas list can't be purchased from a store or wrapped in bows.
The 10-year-old, who has Stage 5 kidney disease, sat on Santa's lap Saturday and asked him for a kidney.
And while she won't get her Christmas wish this year, she hasn't given up hope.
"I just hope I get a kidney soon," she said quietly. "The people that pray for me (inspire me)."
At this advanced stage of kidney disease, Kenley's kidneys have lost nearly all their ability to function, and dialysis or a kidney transplant is needed to live.
For nine hours every night, Kenley is hooked up to an at-home dialysis machine through a tube in her abdomen.
"When you love someone, you want to do all you can to try and help them, especially when it's your child," said her mother, Candi Jones. "There's nothing worse than watching your child fight battles that's out of your control."
In a symphony of beeps, Kenley sits patiently each night, clenching her teddy bear "Jess," while her mother connects her to the microwave-sized machine in a process that takes about 20 minutes and includes face masks to avoid infections.
The machine constricts Kenley to a 6-foot radius around her bed from 8 p.m. through morning, so she reads or plays video games to pass the time until sleep comes.
Her mother stays with her until she falls asleep to make sure everything is all right.
"In the beginning, I was sleeping with one eye open, constantly worried the machine would start beeping, meaning something was wrong," Jones, a Danbury resident, said. "It's been a tough seven months, but I'm so glad she's kept her spirits up. She has her sad days, but she's a trooper."
Kenley, a fifth-grade honor roll student at Pine Hall Elementary, was diagnosed with Stage 4 kidney failure in May and told that her kidneys were functioning at less that 25 percent. Her condition was listed as "severe" and she quickly progressed to Stage 5, her mother said.
Her kidneys stopped growing when Kenley was a baby and are sheathed in scar tissue, her mother said. In May, Kenley's skin developed a yellow tint, prompting a visit to the doctor.
Kenley has been placed on a donor list, but the family is unsure how far down on the list she is. It could be tomorrow or two years from now until they find a perfect match, her mother said.
"She was healthy growing up, so we never expected this," Jones said. "The day we learned about it was heartbreaking. I thought, 'How can we do this?'"
The diagnosis started Kenley on a routine that includes hospital stays, dialysis each night, six medicines a day and shots three times a week.
Because the treatment weakens her immune system, Kenley - who recently overcame two bouts of strep throat - has to do her best to stay healthy.
If she's ill when the family gets the call, Kenley will be unable to undergo surgery, her mother said.
"Kenley gets exposed to a lot of different people throughout the day and some kids go to school sick, so it worries me," Jones said. "Being in the end stages of renal failure, we try to make sure she stays as healthy as possible."
Jones, Kenley's father, Ken Bullins, and Kenley's stepmother, Lorria Bullins, are unable to donate a kidney due to past medical conditions, including Jones' rheumatoid arthritis.
The three parents mailed out pamphlets on Kenley's behalf to potential donors, but have yet to find a match.
Potential kidney donors can be siblings, parents, relatives, friends or even altruistic strangers, according to Johns Hopkins' Comprehensive Transplant Center.
A donor must be in good physical and mental health, be 18 or older, and have a body mass index (BMI) less than 35. They must also be free of conditions, like high blood pressure, diabetes, cancer, HIV/AIDS, hepatitis, organ diseases and infectious diseases.
"You have to be in good general health to be a live donor," Jones said. "A live donor is the best choice for Kenley because it would give her a better quality of life and a longer life expectancy."
While Kenley gets tired due to the organ failure and can't compete on sports teams, she tries to live as normal a life as possible, her mother said.
Kenley, an avid member of her school's "Battle of the Books" team, likes art, video games and playing basketball when she can, the 10-year-old said.
She tells her mother: "You wouldn't be able to keep up with me if I had good kidneys."
Kenley has a big support system both in Stokes County and in Rockingham County, where her father and stepmother live, Jones said.
While she's shy - looking to her mother when she's asked a question and answering meekly from behind her bouncy blond curls - her childlike zest for life shines through with her infectious grin.
Her biggest worry is not being well enough to attend her fifth-grade graduation in the coming year, she said.
Updates on Kenley's condition are posted on a Facebook page, "Kidney for Kenley."
"At this point, she's used to taking medicine and going to the doctor. We just hope a kidney becomes available soon," Jones said. "It's hard, but she's a strong little girl."