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|About Oley: How it All Began|
Lee & Marshall Koonin, Founders of the Lifeline Foundation
You know those thin sponges you can buy that expand when you put them in water? Well, that is what Lee looked like after her first bottle (it was a bottle then) of TPN.
Prior to that happening was a history that probably seems familiar to many of you reading this. Lee had Crohn’s disease for more than 20 years. It was active during the earliest stages when all they knew to do was take out the diseased tissue — whatever it was. Some called it ulcerative colitis, but at the time it was not a well known disease, so there was a question of how to treat it. After more than thirty surgeries, Lee had become so malnourished that she weighed 66 pounds and was dying of starvation. Our physician at the time suggested that I buy a plot. My response was to find a new doctor: one who knew enough about medicine to not give up.
A phone call to the physician who had operated on Lee — a kind and caring doctor, as well as a world renowned surgeon — suggested that we talk to a friend of his right in Boston. What may have had a positive or a negative effect on Lee’s health, was the fact that my work required us to move around quite a bit; we were in the habit of looking for the best doctor in the area. We were now living in Boston, Massachusetts.
TPN was very far from the “routine” therapy it is today. We were still talking about an experimental therapy that was not even allowed in some hospitals. Fortunately, it was okay at the Lahey Clinic and the Deaconess Hospital, and equally fortunate, it was okay with the doctor who carried Lee on toward good health.
That thin sponge expanded with her very first “gulp.” But it was not the weight that changed, it was the eyes: they were alive again. I didn’t realize that the light had almost been extinguished until it came back.
Three days later, Lee said that it was fine to have this, but it is an experiment. She felt like a freak, she was the only one doing this stuff. I was determined that the light would not fade again and set out to find others who were doing this therapy, and to let anyone who would listen know that this “stuff” worked and could save lives.
In those days there was no internet to search for information or communicate with anyone through — we are talking about 1978. The personal computer had not yet been developed. So we contacted an attorney to set up a foundation, the art department of Boston University to design a logo, and physicians in Texas, New York and Seattle, to get the ball rolling. But it was an article about Lee in the local suburban newspaper that was the publicity key. That article led us to Evening Magazine — a precursor to the interview shows of today — who wanted to do a TV story on Lee and the Foundation. It turned out to be the program that received the most responses in the show’s history. From that show, came a drug company prepared to sponsor a national media tour to help tell the public about parenteral and enteral nutrition. In four short lines we have described three years of hard work; of writing the LifelineLetter, making and answering phone calls, arranging the first Lifeline picnic, and getting the professionals to understand that our purpose was to help the process and provide the new “lifeliner” with someone to talk to who understood their situation.
After six years, almost one hundred thousand dollars out of pocket and Marshall’s employer telling him that he could not have this second job, we finally ran out of money, time and ability to expand. We needed help to ensure that the work we had started would continue. The Oley Foundation was just established by Clarence “Oley” Oldenburg, and his physician, Lyn Howard, MD, in Albany, NY, and appeared to be funded and organized in a way that would allow our work to continue on indefinitely into the future. After several conversations, the Lifeline Foundation was merged into the Oley Foundation. We congratulate all the parties in that organization — the families, clinicians, volunteers and dedicated employees — for the effort over the years to maintain the Foundation and grow as they have.