Each year, nearly 25,000 Americans are diagnosed with malignant tumors of the brain or central nervous system. Over 4,000 are children under the age of 15. Among those, only 1-2% will be diagnosed with atypical teratoid rhabdoid tumors (ATRTs). It’s a devastating finding: The five-year survival rate for ATRTs hovers around 30%.
In 2015, Zion, son of Dr. Kosj, a physician-scientist in the field of oncology, and Dr. Jaymi, a special educator and non-profit leader, received a family-altering diagnosis. At almost three years of age, Zion was diagnosed with a rare and aggressive form of brain cancer known as ATRT. Their lives were turned upside down as they grappled with a pediatric cancer diagnosis. Their daughter Zoe-Elle was just about 16 months at the time of Zion’s diagnosis. After about a 15-month battle, Zion entered his eternal rest.
“It was a fierce battle, one that left us forever changed. Our Zion, our hero, inspired us to continue to fight for other children battling against ATRT. We wanted other parents to know they weren’t alone.”
Fueled by grievance and an ever-lasting love for their son, they created Hope4ATRT.
Hope4ATRT Foundation directs resources and research to families in the fight against ATRT. They connect
with families from all around the world who are faced with an ATRT diagnosis. Helping families navigate treatment options, available clinical trials, and support for their stage of the journey. Simultaneously, they seek innovative research to advance the research needed to find new and effective treatments for this rare brain tumor.
“Our hearts were continuing to break for ATRT families who were continuing to run out of treatment options and desperate for cures, just like we were. We know it was only a matter of time before we added an initiative to raise awareness and funds for ATRT research. We also wanted to create a community where we could celebrate the wins but also share in the pain with families at every stage of this journey.”
“When our son Zion passed away, we wanted to create a program to honor our son. He loved music and the arts, so we decided to start a creative arts program for children with medical and special needs. ‘Out of Zion’ was our first initiative, and it continues to this day. It’s beautiful and joyful way that we get to give back to families in the fight and improve the quality of life for kids fighting hard battles.”
Hope4ATRT Foundation launched in May of 2019, becoming an international endeavor when families from Canada, the United Kingdom, India, South Africa, Australia, New Zealand, Brazil, and all across the United States started reaching out, sharing their stories and joining the community.
“Anyone who starts something new can relate to that feeling of not knowing whether what you’re doing will be successful or ultimately make a difference! We had a lot to learn that first year (2019), and thankfully, many amazing mentors along the way. Much of what we do is led with the heart first. There is a lot of inspiration to see change come. The passion and enthusiasm to do the work is something we are so thankful for. However, as with every work that depends on creativity, we do not always have the inspiration for brilliant ideas, rather, there are several moments of doubt and uncertainty as to whether we can keep the work going on for the long haul.”
When asked what they wished they knew before starting this community and non-profit, they answered: “We wish we knew how hard it can be walking through the pain and suffering of our families and reliving our own journey through the stories of the families we serve. These can be emotionally challenging at times, and one needs to learn how to manage these times well to prevent burnout.”
“This work is extremely sacred, and inspiration cannot be forced. As the years go on further and further away from the last moment we had with our son, it’s okay that it feels different. The pain and bitterness were a driving force toward change in the beginning, but now it’s a commitment and a drive to see the landscape change for ATRT, for good.”
They continued on to share what drives their inspiration to continue working towards a cure, stating: “Our beloved son is our inspiration for beginning this work, but getting to know so many pediatric cancer warriors has added so much fuel to our fire. Children are such a gift and blessing. To witness an innocent child struggle with a life-altering diagnosis will change your perspective forever. It can present you with a few choices.
You could crawl into a dark cave and stay there, or you can move toward the light. I have to say being in the dark cave is absolutely okay for a little while (we’ve definitely been there), but not to live there. We felt that as long as we’re here on this earth, there is more work to be done.”
The Yamoahs have lived with their four children, both biological and foster, in Tampa for the last eight years. Their hope for the future is there will no longer be a need for Hope4ATRT as they will have found the cure, and it will no longer be a grim diagnosis for the families of these children. But for now, they continue to press on to raise funds and create channels for ATRT research to be advanced. They also try to connect with families and supporters by celebrating/remembering their Warriors. Their virtual events, such as ATRT Rally, Battle Run, Get Moving, Bubble Days are some of the ways they raise awareness.