By Ruby Thomas, Record Staff Writer
Eight-year-old Sam Kauffman undergoes 11 hours of kidney dialysis every night and has been through more hospitalizations and medical procedures than most people will experience in a lifetime.
Through it all, he remains “the sweetest little kid,” said his father Kenyon Kauffman, who along with his family belongs to Holy Trinity Church.
Sam was diagnosed with end-stage kidney disease a little over a year ago. Since then, the family has been searching for a person who can donate a kidney to their young son.
Kenyon and his wife Tara Kauffman have been ruled out as potential donors.
“It’s hard to ask someone to do this, but if you can find it in your heart and it’s a possibility for you, please do it,” said Kenyon Kauffman during an interview in his home Dec. 17.
Sam was born with cognitive and developmental delays. He lives with mild to moderate hearing impairment and communicates using sign language. Yet, his father described him as a “perfectly healthy,” child who loved to “run around and play” until last fall when he started showing signs of kidney disease.
Sam was immediately hospitalized for several months as his health diminished. As a result of failing kidneys Sam became anemic, his cholesterol levels increased and his pancreas and gallbladder were affected.
Between September and October of 2017, both his kidneys were removed, said Kenyon Kauffman. Sam is kept alive through peritoneal dialysis — a procedure that uses the lining of the belly to filter blood. This is done every night for 11 hours while Sam sleeps, his father explained.
This procedure can keep young Sam alive for a few years, but it’s not easy for him or the family.
“It’s hard,” said Kenyon Kauffman. He explained that his son was making strides with his developmental delays, but the kidney diagnosis has set him back. “He’s like an infant again. It’s tough, but eventually, it’ll get better.”
Sam’s developmental delays have proven to be a blessing throughout his illness, said Kenyon Kauffman. Sam doesn’t understand a lot about what’s happening to him.
“He’s so sweet. He’s been very good about everything. He accepts and trusts everything we do. He whines for a couple seconds and he’s good.”
The deterioration of Sam’s kidneys was caused by a rare condition known as focal segmental glomerulosclerosis or FSGS — which attacks and scars the tiny units in the kidney where blood is cleansed, according to the National Kidney Foundation.
When Sam was diagnosed, both his kidneys had been irreparably damaged, said his father.
There are two types of the disease, primary type which occurs without a known or obvious cause, and secondary which is caused by another disease or drug use, according to the National Kidney Foundation.
Kenyon Kauffman said Sam’s condition has no known cause and research is currently underway in the medical world to determine why primary type FSGS happens.
He said his son started to get sick at the end of the summer last year. He was not eating and there was some swelling on his body, but the family didn’t think it was due to a serious disease. He and his wife are nurses, he said and looking back they realized the signs were there.
“It’s hard to see it initially. And it’s hard for a child who doesn’t communicate to catch stuff like that,” he added.
Who can donate?
Any healthy individual between the ages of 18 and 55 with O blood type can be a donor. The individual has to pass a battery of tests, according to the National Kidney Foundation, including:
- A financial consultation.
- A psychological consultation.
- Medical testing consisting of blood and tissue testing, CT scan, consultation with a kidney specialist and a cardiologist.
Individuals interested in becoming a donor may contact Laura Mooney, a nurse who serves as a living donor coordinator at Cincinnati Children’s Hospital, where Sam is a patient, by calling 513-636-7201. Testing can be done in the donor’s home state.