Patti Gustafson and her husband Allen lead the Swifty Foundation, established with their late son, Michael, to raise research funds and awareness for the pediatric brain cancer he battled before his death at age 15.
Patti recently spoke to our Eversight staff and at our Illinois gathering of families whose loved ones—like Michael—gave the gift of sight to restore vision to others. This Eye Donation Month, as we continue celebrating the gift of sight and encouraging everyone to register sight-restoring donors, we want to share the story Patti shared with us.
When your child wants to be an organ and tissue donor to help other people, yet his body is riddled with cancer and the toxic chemicals used to treat that cancer, we thought no one will receive this gift so lovingly and hopefully offered.
My son Michael wanted desperately to find meaning and purpose to a life that was ending before he had a chance to fully live it. Michael was diagnosed with medulloblastoma, a pediatric brain tumor, at the age of 10.
With an 80 percent survival rate, he bravely and optimistically went through a craniotomy here in Chicago. Then, five days a week for six weeks, he received radiation to his brain and spine with chemotherapy in Boston, before coming home to Chicago for six months of chemo. He actually missed less school than his twin sister—he was so determined to be strong and “normal.”
Michael was in remission a full year when we got the devastating news that the tumor had returned. With medulloblastoma, the survival rate if it returns is less than 5 percent. We were stunned.
Determined to realize a dream
Before cancer, Michael was an amazing athlete. He excelled at most sports, but his favorite was gymnastics. He even won first place at state in the pommel horse. He never lost a handstand contest at gymnastics meets because that contest is all about determination, strength and balance—which he had in spades.
It was incredibly difficult to go from being the best athlete, the fastest kid in your class to the slowest. For the five years Michael lived with cancer, he worked incredibly hard to regain his strength, to stay at the top of his class in his studies, and to raise money and awareness for pediatric brain cancer.
Michael’s dream was to be a scientist. He was shocked to discover he would not realize that dream or all of the others, like learning to drive a car, go on a date, continue his education and find his way of helping others through work and service. It pained him so to feel his life wasn’t going to matter. Convincing him otherwise was difficult. He wrestled with finding meaning to his unimaginably shortened life.
He came up with a plan to still help science, not by becoming a scientist but by donating his body to others. His hope was to be an organ donor, but we quickly discovered that was impossible and he was so disappointed.
Finding the good in the tragic
Through more research we discovered Eversight. Michael was so excited to learn he could help someone see the world after he was no longer able to. Through the miracle of science, a piece of him literally would transform another person’s life. This appealed to Michael on so many levels.
Michael was a voracious reader. As the tumor grew, he began to see double. At first, glasses helped, but there came a day when the clock turned back and he asked me to read to him again. Some of our best times together were with Michael and his twin sister, Bridget, snuggled into my lap reading. To return to that precious activity as he lay dying was bittersweet.
Being unable to read or see things clearly and knowing how it impacted his daily life and ability to be independent made a huge impression on Mikey. He was even more excited at helping someone else overcome their vision problems. It was finding the good in the tragic that allowed him to let go, bit by bit, of all he held dear.
Michael was also determined to contribute to science by donating his tumor tissue to science, so that scientists could study his brain and spine to determine why he wasn’t one of the 80 percent of survivors of this dreadful disease. It was through donating Michael’s tissue that we discovered the great need for, and lack of, diseased tissue for researchers to study to find better treatments for pediatric brain tumors.
Post-mortem brain tumor tissue collection has become the focus of the foundation Mikey started before his death at age 15, the Swifty Foundation. Working for Swifty has been how we have channeled our grief for Michael. In working to further research, our family has been able to carry on Michael’s legacy of helping others, furthering science and finding purpose and meaning in the unimaginable.
Amid the sorrow, a gift for two families
The day we heard from Eversight that a woman received Michael’s corneas and was now able to see and take care of her children was one of the brightest days of a really sorrowful time in our family’s life.
Not knowing the science behind corneal transplants, I imagine that Michael is still looking out at the world taking in the beauty all around us—birds, butterflies, his favorite color orange, flowers and mountains. It’s magical thinking, and it really doesn’t matter if it’s true or not. The fact is, Michael made a gift of himself that helped another.
As the recipient of his corneas gazes at her children with love in her eyes, it’s partly through Michael the gaze occurs. That gift is a gift to her and her family just as it was a gift to Michael and our family, as we know he still looks out on the beauty that surrounds us all.
Learn more about the Swifty Foundation at swiftyfoundation.org. To register your wishes to be an organ and tissue donor, click here to join your state’s registry.
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