Full Circle: 80 Years later, a CHOP kid gives back

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Stan Kraftsow as a child Stan Kraftsow as a child. Several mornings a week, 84-year-old Stan Kraftsow and his wife, Carole, play tennis, sometimes against each other, sometimes as a high-energy doubles team.

Stan recognizes that anyone still on the court at his age is lucky, "but I’m even more fortunate than most," he says, calling to mind the childhood illness that made activities like tennis impossible — and threatened his life — eight decades ago.

When Stan was just 3 years old, his body mysteriously began to swell up. His concerned parents, Minnie and Ed, took him to doctor after doctor, but no one could determine what was wrong. For six months, Stan's swelling got progressively worse.

A diagnosis eluded each clinician they saw until the family arrived at CHOP, where nephrologist Mitchell Rubin finally found the answer.

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"Dr. Rubin knew right away what was wrong, but at the time, nobody knew how to cure it," Stan recalls. "He told my parents I had a 50-50 chance of survival."

While today, physicians treat nephrotic syndrome with a combination of steroids and immunotherapy, these strategies were not available 80 years ago. Dr. Rubin tried treating Stan with frequent penicillin injections and sulfur pills, to no avail. The most effective treatment was blood transfusions to maintain his protein levels.

"I couldn't tell you how many transfusions I had over those three years," Stan says.

Midway through these treatments, Dr. Rubin relocated, and another CHOP nephrologist, Milton Rapoport, MD, took over Stan’s care.

Because he was immunocompromised, Stan had to spend most of those years in isolation, only seeing his parents and close relatives. At the hospital, nurses gave him his own storage cabinet for toys, and at home, he passed time playing with model trains. Rarely, he was able to ride his tricycle outside.

Stan and Carole Kraftsow Stan and Carole Kraftsow "Three years is a big chunk of time out of one's youth. Thinking about my childhood experience, being mostly alone, it still makes me very emotional," Stan reflects.

After those three grueling years, Stan caught measles. While several studies in the 1940s reported that measles infection correlated with a spontaneous end to nephrotic syndrome in children, Drs. Rubin and Rapoport knew it would be unethical to infect Stan intentionally because the virus itself could be lethal. In a way, by contracting measles accidentally, Stan ended up curing himself.

Stan never relapsed. He grew up to enjoy sports, school, and eventually, a long marriage to Carole – 56 years and counting – and six grandchildren.

"Measles cured me, but I also credit Drs. Rubin and Rapoport with their kindness and their willingness to do everything they could to get me well. They helped make sure I could go on to live a long and happy life."

To honor the CHOP doctors who cared for Stan and his devoted parents, he and Carole recently included a bequest in their estate plan to create an endowed kidney research fund at the hospital.

"I was too young for any of the situation to make much sense to me at the time," Stan says. "But I hope our gift would mean something to Drs. Rubin and Rapoport, who back then were the best experts anywhere, and to my parents, who never showed me their stress but went through a heck of an ordeal. I was their only child — the center of their lives."

The Kraftsow Endowed Fund in Honor of Dr. Mitchell Rubin and Dr. Milton Rapoport will bolster research into nephrotic syndrome along with other kidney diseases and approaches to treating them.

"All I want is for it to save children’s lives," Stan says. "When I see sick children or children who are in the hospital, I still relate to them. They all deserve to have full lives like I have — in large part thanks to CHOP."