This story begins in the wildly inventive, clever, gentle, tumor-ridden brain of a fourteen-year-old boy from Woodridge, Illinois. On a September afternoon in 2012, Michael Gustafson woke up from a nap with an idea. He was going to donate his body to science “so that no other child would have to go through” what he did. His idea stemmed from the movie Seven Pounds, in which Will Smith’s character, Ben Smith, donates his organs to save seven ill strangers. Michael’s terminal illness weighed heavily on him, and he grieved over how he could possibly make his mark on the world if he was to die at the young age of fifteen.
Michael’s dream job had always been to be a scientist, and so, for him, tissue donation was the solution. It provided him much solace to know that the physical remnants of his life could possibly contribute to curing the disease that cut it short. Despite the excitement that this idea brought Michael, he had his doubts. His dad remembers him saying later that fateful September day, “I want to do what Will Smith’s character did… but nobody would want my damaged tissue anyways.” His parents weren’t scientists. They didn’t know if his tissue would be viable or not. They didn’t even know if doctors would want their child’s diseased tissue.
What they did know was that they were going to do everything in their power to make Michael feel as if his life, short as it was, had meaning. After five years of having to sit by helplessly watching Michael lose things like his hair, his identity as an athlete, his ability to attend school, read, play games and eventually walk and swallow, Michael’s final request was something they would travel to the ends of the earth to make happen. This idea of Michael’s became the catalyst for a torrent of calls, research that led to endless rabbit holes and dead ends, and loads of work for Michael’s parents as the clock continued to tick on his metastatic medulloblastoma diagnosis .
After exhaustive searching by his mother, she finally stumbled upon Nancy Goodman of KidsvCancer. It was KidsvCancer, with a giant assist from Michael’s pediatrician, who removed the obstacles that made tissue donation possible for the Gustafson family. Michael’s whole brain, spine, and tissue were successfully harvested on January 6th of 2013. His tissue went to two separate labs each working on medulloblastoma. Cell lines and mouse models were created and his tissue was involved in breakthrough discoveries about the biology of metastatic medulloblastoma.
Alongside their work to get his tissue donated upon his death, Michael’s parents told him they wished to allocate all the money they had saved for his college expenses, wedding, inheritance, etc. to start a foundation. They allowed him to pick the mission of the foundation with the knowledge that his twin sister, older brother, several close friends, and young family members would work to carry it out. For the same reason he desired to donate his tissue, he decided the mission of the foundation would be to fund pediatric brain cancer research, and thus, the Swifty Foundation was born.
In the foundation’s infancy, the Swifty board scanned the landscape of pediatric brain cancer research to determine a clear focus for their funding. They discovered the donation of tissue, particularly autopsy tissue, was crucial to furthering research. This was not only an area the board felt competent in making a contribution in, it aligned perfectly with Michael’s dream. The Swifty board set to work on a two prong strategy. One was to solve the complicated logistics of autopsy donation and make it simple for families who make the choice to donate. The second was to educate and advocate so autopsy donation would no longer be the exception, but rather become a common choice families make to try to bring some good from an unimaginable tragedy.
In 2014, the Swifty Foundation attended the conference held by the Children’s Brain Tumor Tissue Consortium (CBTTC ) in New Orleans. Patti and Al were drawn to the open-source data sharing that CBTTC had developed. This intrigue led them to a collaboration with the CBTTC in the form of a tissue navigator position at the Children’s Hospital of Philadelphia (CHOP). The tissue navigator was a position created to help ease the burden on a family with a terminally ill child of all the logistical processes that must come together for a successful tissue donation to occur.
All that the families would have to do is give consent for their child’s tissue to be donated and make one phone call at the time of their child’s death. This call would put into motion the coordinated system of tissue collection arranged by the tissue navigator.. After filling the tissue navigator role at CHOP, the position was expanded to Lurie Children’s Hospital of Chicago and Lucile Packard Children’s Hospital at Stanford. The vision is to develop a network of navigators across the country so that donations can be successfully made from anywhere in the United States.
The second effort to vitalize post-mortem tissue donation in pediatric cancer patients is education and advocacy for cultural change within the medical community and among families that lose children to brain cancer. The disconnect lies in the sad reality that most families, like Michael’s, are never asked about donating. There are many reasons for this, including oncologists or trusted medical professionals who are not aware of the value of donating tissue or just too uncomfortable to ask.
The effort to educate and advocate for autopsy tissue donation has taken expression in the national initiative Gift from a Child. The initiative serves to increase postmortem pediatric brain tissue donations through advocacy as well as the education of families enduring the tragic loss of their child. Gift from a Child is funded by the Swifty Foundation and it operates in concert with the CBTTC. It is supported by families who have lost children to brain cancer, private foundations, researchers, and medical professionals.
Gift from a Child was launched in December of 2018 at a family forum at CHOP to begin the process of ratifying postmortem tissue donation education by organizing a family forum. Fifteen families of the pediatric brain cancer community, most of whom had successful tissue donations and some of whom that were frustrated by their inability to donate, were brought together to share their own experiences. Ultimately, the family forum was intended to organize these families to become the grassroots change for the post-mortem tissue donation cultural shift that Swifty and the CBTTC are trying to enact.
