A Gift Money Can't Buy -
A Story of Donation

By Nancy Sando
Published in the August 2003 Connection

This article, written by recently widowed Nancy Sando, focuses on the decision to make a deeply personal contribution to FOP research. She hopes her and Andy's story will encourage others to make arrangements to do the same.

When our local doctor and I were talking by phone that fateful morning, we had just found out that Andy had peacefully passed away in the night. Needless to say, we were both in shock, although we knew Andy's health had been spiraling downward.

The first gentle suggestion our kind doctor gave was, "Maybe you should call Fred (Kaplan) to see if there was any part of Andy's earthly body that can be used in research."

Minutes later I was chatting briefly with Fred, and he put me in touch with his lab colleague, Dr. David Glaser. Even though I was in a fuzzy state of shock, I'm glad I did listen to our doctor's urging to call Philadelphia. Here is how the story unfolded:

First, our local doctor suggested an autopsy for Andy. I agreed to this because we both wanted to know what caused Andy's death, as he had been struggling with myriad maladies during the last few weeks of his life. As it turned out, the cause of death was pulmonary edema, which means his lungs filled with fluid. Knowing this, it eased my mind that our doctor had been fully addressing Andy's decline. It just got to the point that Andy's body couldn't handle it any further.

During the autopsy, the local pathologist received instructions from Dr. Glaser as to what was needed for their research into FOP. I signed an authorization for both the autopsy and research contributions from Andy's body. Our local pathologist was very cooperative in extracting bone marrow that the Philly team requested. I gave the "go-ahead" for him to give whatever was requested. The tissue was delivered to Philly that very day.

Several years ago, Andy and I had discovered (for another older FOPer) that transporting an entire body across state lines is cost prohibitive and very difficult to accomplish. Transporting samples from Andy's body was simple.

The day of Andy's memorial service, many friends and family members were still at my home when the phone rang. It was Dr. Glaser, informing me that the samples they received were all "good" and would wonderfully aid in research of FOP and other bone-related diseases. He kept thanking me profusely. Dr. Glaser described the exciting plans the team had to use Andy's bone marrow. They had already "processed it", put it in deep freeze for continued use, even stating that because the bone marrow was still living, they could reproduce the cells to create lots more of the same. He said, "Andy may have died, but he is still living here in our lab. And because of that, many people may benefit from this much-needed gift."

It dawned on me to ask him, "I know that there have been a few FOPers that have died in the recent past. What makes Andy's gift greater than the other's who have contributed research specimens?"

His answer is why I was prompted to write this plea. Apparently, the communication network hasn't been established to allow for recovery of precious tissue. In Andy's case, the network was activated in a timely fashion. It was early enough for the successful recovery of living tissue. This is imperative for research. Yes, other samples can and do help, but living cells from bone marrow cannot be obtained without an invasive procedure.

The team had been waiting five long years to receive live bone marrow to continue research, using models (mice 'n such). It was explained that when a person dies, there is generally between twelve and twenty-four hours to extract live bone marrow, before it dies, too. As Dr. Glaser said, Andy's situation was advantageous for all concerned. He died in the hospital. He was transported to the pathology department within five hours, then necessary specimens extracted, packaged and shipped immediately. The circumstance for all that to happen in a time fashion was an act of God (if you ask me).

My plea is this: Those of you who have FOP who desire to make this important contribution to research, please consider talking with your doctor (and documenting your intention) so that you, too, can offer these vital specimens to aid in FOP research. In Andy's case, I, being his wife, gave authorization for all this to happen. I realize, for my own intentions, I need to document my wishes of contributing specimens upon my death, so that I, too, can contribute to this research.

Andy gifted the FOP community something money couldn't buy. Andy was always a generous person, whom I will always love. He was generous to all of us even in death. He still lives in the FOP lab. Please "give" what you can at the time of your death. It could bring life to others.