I write about this from three perspectives: as a friend of Sam and his family, as a fellow advocacy organization leader, and as Genetic Alliance. I’ll take these in reverse order, since in the end, relationships are quintessentially personal, and all too often in the world, we worry we won’t seem ‘professional’ if we speak from our hearts. I have no fear here.
Genetic Alliance lost a great warrior for the cause on Friday. Sam was an ambassador for a phenomenal balance: seeking treatments with vigor and still living life to the fullest, not being defined by the disease. He told all of us this in Life According to Sam: “I didn't put myself in front of you so you could feel bad for me; I put myself in front of you to let you know you don't have to feel bad for me.” Sam lived life to its fullest, and dealt with more adversity than most people face in a long life. He was resilient, cheerful, and wise. After all, at the end of his recent TedX he admonished ‘never miss a party’ if we could help it. Sam’s Dad Scott, gave many years to Genetic Alliance as a board member, even while working hard for their own foundation. Leslie and Audrey gave of their time in numerous meetings and conferences. One can ask, aren’t there many deaths that are critical to the community? I believe there are – too many to write about, too many to comprehend. Many of us know our own ‘Sam’ and it is because of them, that even if we did not know Sam, we are touched by his death. We strive to change this world where our loved ones die before their time, and so Sam is certainly both Sam, and he is also a representative for those we love.
Leslie, Scott, and Audrey founded the Progeria Research Foundation about 15 years ago. They hacked through some dense forest uphill under adverse conditions. (Maybe they take after Sam!) Building a foundation for a disease that affects fewer than 200 children in the world, many of whom live in developing nations, is no small feat. Creating a dynamic research program, raising millions of dollars and running successful clinical trials that lead to treatments in a short time, is breath-taking. Sam shared his parents with nearly 200 other kids like him, and he loved those kids, mourned their passing, and learned great things from his time with them. They, I am sure, saw him as their big brother. After all, he endured the same needle sticks they did, had the same fears and hopes. In our fellowship with the Gordon/Berns family, we who founded support groups and who run them now, know well the struggles we face and the small victories we relish. There are a large group of us who ‘grew up’ in this world together, and our children are now in their late teens and early 20s. I am awed at this tenacious group of advocates who created lay research foundations in an age when we were scoffed at, denied access, and given back seats. Again, a page from Sam’s book of life, or taught us so well: “All in all, I don't waste energy feeling bad for myself," Sam said. "I surround myself with people that I want to be with. And I keep moving forward." For so many of us in this community, our friends are other people with genetic conditions, other parents working on changing the world, and we share each other’s pain and joy. And so we are all with Leslie and Scott, and Audrey, these days as they prepare Sam’s service and sit Shiva.
Finally, my personal reflection. I am deeply stunned and saddened. Long ago, little Sam played with our little Elizabeth and Ian as we parents talked about the founding of the Progeria Research Foundation in our living room in Sharon, MA. We intersected regularly when, after we moved to the DC area, we went back to Massachusetts and stayed with the Gordon Berns; or when on trips to DC, we shared meals in our Maryland house. I remember picking Sam and his parents up in our especially dog-smelly van. He was a little guy then, but he had no trouble telling us that our van was so smelly he wasn’t sure he could ride the two miles to our house. We rode with the windows open and the fan on. On another visit, Sam entertained us with perfect imitations of his beloved Red Sox announcers. Our children, Elizabeth and Ian, loved visits with Sam, and so I was grateful it was Elizabeth who told me he had died. When we told Ian, he said, “There was major enlightenment in that boy’s short life. He is an inspiration to me.”
As parents of children with rare or genetic diseases, we all feel deeply connected to one another. Each child is our child, we see them in each other. There is a hole in my heart, in our work, in our world. It will not be filled. It is space to love Sam, to dedicate my work to him, and to hold space for all who suffer. In the words of Elizabeth (then 14 yrs old) right after a visit from Sam (5 yrs old), “When you stop fighting disease, and start living with it, like Sam does, like we do, you will make progress.” I am deeply aware that knowing Sam was an amazing treasure in our lives. There is much to still unfold in all he offered us. As we live with his life and death, may we all “keep moving forward.”
Please see these beautiful tributes to Sam:
Francis Collins, Director of the NIH
New England Patriots’ tribute to Sam
The family requests privacy at this time. Expressions of sympathy and support may be expressed using #prfsam on Twitter and The Progeria Foundation Facebook page and/or directed to:
The Progeria Research Foundation at P.O. Box 3453, Peabody, MA 01961-3453.
Sharon F. Terry
President & CEO, Genetic Alliance
Founding CEO, PXE International