Twenty-two-month-old Wyatt Clayton was born weighing 3 pounds, 9 ounces, spending six weeks in the neonatal intensive care unit and enduring 10 infections requiring hospitalization — all while his family searched for answers.
He was finally diagnosed with a rare disorder called MIRAGE syndrome (myelodysplasia, infections, restricted growth, adrenal insufficiency, genital phenotype and enteropathy).
“We desperately scoured the internet for any information we could find (on MIRAGE syndrome), but we are at the mercy of a few research papers, none containing answers on what to expect or effective treatments,” said Corey Clayton, Wyatt’s dad. “So, it felt like an answered prayer when we learned one of the few doctors in the world who researches this condition was less than three hours away at Vanderbilt, Dr. Schwartz.”
Jason Schwartz, MD, PhD, assistant professor in the Division of Pediatric Hematology/Oncology at Monroe Carell Jr. Children’s Hospital at Vanderbilt, studies a gene called SAMD9, which can cause severe syndromes that are apparent right after birth like MIRAGE. These syndromes result in other bone marrow conditions that ultimately may lead to leukemia. His research focuses on understanding how these mutations in SAMD9 cause bone marrow failure and increase risks of cancer.
Schwartz was recently awarded a $100,000 Hyundai Hope On Wheels Impact Award to further his research and understanding of SAMD9.
Since 2007, Hyundai Hope on Wheels, which includes funding from Hyundai Motor America and local dealerships, has awarded more than $2 million in funding to pediatric cancer researchers at Monroe Carell. Each year in September during Childhood Cancer Awareness Month, representatives from the automaker and local dealerships celebrate grant award recipients and pediatric patients with a handprint ceremony, representing their personal stories of courage and hope.
“The association between SAMD9 mutations and pediatric cancer was only made less than 10 years ago,” Schwartz said. “Exactly how these mutations cause cancer, how they cause syndromes or bone marrow failure, is unknown, and that is the ultimate goal of my research —to understand the ways, the ins and outs, of what a SAMD9 mutation does in a cell to result in syndromes, bone marrow failure and eventual leukemia. Hyundai and their support are vital to helping these research projects move forward.”
Lauren and Corey Clayton said Schwartz has helped Wyatt, who is doing well, and his journey with MIRAGE syndrome.
“It’s unbelievable the strength that Wyatt and so many other kids fight with when faced with these unfair circumstances in life. But they can’t fight it alone. It takes time, people, and an incredible amount of resources to give these kids a fighting chance. So, from the bottom of our heart, I want to thank Hyundai Hope on Wheels for dedicating the resources to helping these kids, and I want to thank Monroe Carell and Dr. Schwartz for all that you do for your patients and their families.”
Representatives from the automaker and local dealerships presented a check to Schwartz at a recent handprint ceremony that included pediatric cancer patients at Monroe Carell. During the event, the children dipped their hands in paint and placed their handprints on a white Hyundai Santa Fe to represent their personal stories of courage and hope.
“Every 36 minutes, a child is diagnosed with pediatric cancer, and over 44 children every single day receive this devastating news,” said John Fratianni, senior merchandising manager for the Hyundai Motor America Southern Region. “This is no fault of their own, and it forces them to deal with true adult issues. That’s why Hyundai Hope on Wheels is so dedicated to this lifesaving cause. “Hope Lights the Way” is the theme of this year’s initiative. It reminds us to remain steadfast in our commitment in funding research and programs to fight this disease. We are hopeful for a future free from childhood cancer.”
Monroe Carell is one of 91 institutions across the country to receive grants totaling $26 million in celebration of Hope on Wheels 26th year. The initiative has donated more than $250 million in grants since its inception in 1998.
