Jaymi Yamoah of Tampa, Florida, noticed something off about her nearly 3-year-old son, Zion. He seemed more tired than usual, and by mid-morning, he wanted a nap. He also began showing a weakness in his left hand, followed by him subtly dragging his left foot. By the next day, April 30, 2015, with the issue still present, Jaymi pointed it out to her husband, Dr. Kosj Yamoah, an adult radiation oncologist with the Moffitt Cancer Center.
After observing Zion play and run, Kosj noted the foot drop and wondered if it might be a neurological issue. They took Zion for tests and received a much-worse report than expected: an 8-by-8-centimeter brain tumor. Zion needed immediate surgery.
Jaymi refused to let fear take hold of her.
“I looked at the experience as a one and done,” she says. “They are going to take out the tumor, he’s going to recover, and we are going to move on.”
That confidence quickly changed when the pathology report came back: Zion received a diagnosis of an atypical teratoid rhabdoid tumor (ATRT) — an extremely rare and aggressive childhood cancer that affects the brain and spinal cord. The prognosis: poor.
Though Kosj worked as an oncologist familiar with the medical world, the couple found themselves thrust into trying to figure out what to do next and where to find clinical trials in which Zion could participate.
“It was tough and confusing to navigate,” Jaymi admits.
They immediately began the treatment protocol the medical team suggested and saw Zion handle it well. Their hopes rose as, at the end of September, four months into the ordeal, Zion had a clean scan, and he entered his second round of treatments.
However, six weeks later, another scan revealed that the cancer had returned. This time, it amounted to leptomeningeal spread: small specks of tumor throughout the brain and spinal cord. Now specialists encouraged Jaymi and Kosj to begin considering quality-of-life options.
“We focused on life and enjoying our time with Zion,” says Jaymi. In particular, they concentrated on activities that brought Zion peace and joy, namely singing and dancing to worship music, as well as dressing up as a superhero. Every day, they surrounded themselves with music that he loved.
“He was such a lover of worship and a lover of God’s presence,” Jaymi says. “These were Zion songs.”
One of their most memorable moments occurred when the church they attend, Bay Chapel, created an event specifically for Zion called Superhero Day. Children in the church dressed in superhero costumes, sang “Nothing Is Impossible,” and danced for the congregation.
Though they leaned desperately on their faith, in July 2016, eight months after relapsing, 4-year-old Zion lost his battle.
As the couple processed their grief, Jaymi thought back to the event the church had created for Zion and how much joy it brought them.
“I knew immediately we could continue Zion’s legacy,” she says. “I wanted to develop a similar program for children who are going through difficult times to give them some of the things that had brought Zion such joy.”
In January 2017, six months after Zion died, Out of Zion, a nonprofit creative arts program for children with medical or special needs, was born. The organization offers summer camps, afterschool programs, and superhero events.
Kimberly Tally and her then-8-year-old son Desmond became involved because of his cognitive disability.
“Out of Zion has given Desmond a completely positive experience,” says Kimberly. Desmond, now 11, is able to have fun being involved in outlets that are more normal for him .
“To be with other kids in similar situations is amazing,” Kimberly says. Desmond’s 6-year-old brother, Trajan, also has been able to participate, making the experience more special for Desmond.
Since its creation, Out of Zion has served more than 250 families. And during the pandemic, programs have gone virtual, allowing the organization to reach even more families.
In addition to the creative arts program, in 2019 Jaymi and Kosj founded Hope4ATRT, devoted specifically to helping parents find the information they need to navigate their child’s diagnosis, as well as supporting ATRT research. Hope4ATRT has been well received, with one result being researchers sharing studies. Most surprising, according to Jaymi, is how quickly families who are fighting ATRT have found the organization. In less than two years, more than 100 families from across the globe have come to Hope4ATRT for help and encouragement.
Even with running two nonprofits, as well as parenting Zion’s younger sister, 7-year-old daughter, Zoe-Elle, Jaymi, 34, has no interest in slowing down in her mission. A graduate of Southeastern University, she recently completed her doctorate at her alma mater in Lakeland, Florida , studying education with a concentration in organizational leadership.