Drayson “Dray” Tate Stewart – also “Tater Tot” to his family – is a typical 3-year- old in countless ways.
He loves music and dancing. He’s really into Buzz Lightyear of “Toy Story” fame. He owns a favorite Batman blanket. He loves food – making (a mess) and eating it, too, when up to the task. He likes wrestling with his grandfather and making fun of a body shape perfected over six decades: “What’s inside your belly, Papa? A bowling ball?” He enjoys tormenting his older brother, 8-year-old Duke, who isn’t allowed to punch him, which Dray knows and which has him taking full advantage.
That’s because Dray is different in one very distinct and unfortunate way. He suffers from two very rare diseases – lipodystrophy, an autoimmune disorder that destroys fatty tissue, and a pediatric brain tumor thought to be not only associated with it but perhaps the cause. As a result, his grandfather, Jim Clarahan – the aforementioned “Papa” – has found a new purpose in his late-career life: raising awareness and money for research into a cure for the disease that has both broken and expanded his heart. That effort continues on Saturday, Sept. 25 with a 5K/1 mile run/walk started at 8 a.m. at Peoria’s Donovan Park. There will be seven race flights, in age categories ranging from under 15 to 60 plus. If you haven’t already registered, the fee to participate is $30 by Sept. 22, $35 by Sept. 24, $40 day of race. ShaZam Racing and RC Outfitters are coordinating the race. Register for Papa’s Run 4 Dray here.
Following the races, the party moves to Peoria Heights, specifically outside the Pabst Building at 4541 N. Prospect Road. Refreshments will be provided by Clink Bar, with live music from Patrick ‘n’ Swayze. Food will be available. The party is free to all, though donations will be accepted, along with chances to compete for raffle prizes, a silent auction and 50/50 drawings. If he’s up to it, Dray may make an appearance himself. Look for the little guy feeling the beat on the dance floor.
But a few years ago, no one could have imagined that any of this would be happening. When born to mom Payton and father Donivine Stewart – known locally as the former Bradley University and Limestone High School basketball player – nothing seemed out of the ordinary. Dray was “a happy, chunky little boy,” said his grandfather, by his first birthday clocking in at the 90th percentile of children his age for weight and body mass. Seemingly overnight, everything changed. He began losing weight rapidly. His diapers would fall off. “He just started melting in front of us,” recalled Clarahan. Over the span of months, he went from “chunky” to “emaciated.” His worried parents took him to doctor after doctor. Eventually, a diagnosis of lipodystrophy came, though doctors remained stumped by the cause, with genetic testing consistently coming back normal. As Dray continued to deteriorate, his parents were able to secure an appointment at Mayo Clinic in Minnesota. There, Clarahan and daughter Payton shared their research on the link between lipodystrophy and brain tumors with pediatric endocrinologist Dr. Vinaya Simha, who by chance had interned under one of the world’s foremost researchers into that connection, Dr. Abhimanyu Garg, at the University of Texas Southwest Medical Center. Dr. Simha immediately ordered a scan. Sure enough, Dray had a malignant, golf ball-sized tumor in the middle of his brain, out of reach of surgeons. What followed were 60 weeks of chemotherapy. The celebration following the final day of it – on Dec. 23, 2020 – was euphoric, making for a very merry Christmas, indeed. That feeling was not to last.
In January of this year, Dray began suffering debilitating headaches accompanied by fever. The brain tumor had grown, with the cancer spreading to his brain stem, cranial nerve endings and spine. “That was a punch in the gut,” said his Papa. Even before that, Clarahan had experienced an epiphany that caused him to reevaluate his priorities. He’d been a “hands-on dad,” and “I wanted to be a hands-on grandpa,” said Clarahan, but when he first got the bad news, “I was shell-shocked. I didn’t understand the medical terminology. I knew there was nothing I could do other than be a sounding board for Donivine and Payton.”
A once-in-a-lifetime pandemic compounded the frustration, with Papa relegated to delivering food and gifts to the Stewart home and communicating through a closed doorway.
“There’s got to be something I can do,” Clarahan remembers thinking at the time.
In mid-2020, prompted by a challenge from his son to back up his words and concerns with action, the manager of global compliance for financial
services firm RSM started a not-for- profit – the Draysontate Children’s Cancer Research Fund LTD NFP (“R4D,” for short) – in order to accept tax-exempt donations. In August of last year, he also hopped on his motorcycle for an 11,000- mile, 34-state tour – 40 RMS offices in 40 days, plus a few more – to educate and secure dollars for what Dray and others are facing, with the full blessing and backing of his corporate bosses. Remarkably, he raised $155,000 in his first swing at serious fundraising, which was split between OSF Children’s Hospital of Illinois/The Heller Center for Kids with Cancer, Mayo Clinic, the National Brain Tumor Society and UT Southwestern Medical Center. Now Clarahan is personally matching the first $10,000 in donations for the Papa’s Run 4 Dray 2021 campaign. Beyond that, helping to get the word out to doctors about massive weight loss being a possible symptom of a brain tumor in these situations -- so they know what to look for -- is something he considers a major accomplishment.“I’m planning on doing something every year,” said Clarahan, who is grateful for the help of friends such as Jodi and Jim Fulton, who are assisting with the planning in Peoria Heights, and other family members such as Dray’s grandmother, Marilee Seppelt. “I’d like to continue this mission forward until we get a solution for kids’ cancer. It’s probably not going to happen in my lifetime, but who knows?”
As for Dray, there has been some good news of late. He has been accepted into a two-year clinical trial through St. Jude in Memphis, which means chemo twice a day, every day, for two years. There are potential side effects – vision impairment, given the tumor’s location near his optic nerve, nausea – but all in all thus far, he’s taking it well. A recent scan showed the tumor starting to shrink and pulling away from parts of the brain to which it had become attached. He’s even gained a few pounds.
“Ever since he was a cognitive little human being, all he’s known is cancer, being poked with needles, having blood drawn,” said his grandfather. “That’s his normal, which is kind of bad for a 4-year-old kid. But he’s not lost his personality. He’s a very sprite and energetic little boy.”
Meanwhile, all involved contend with the hand they’ve been dealt, with hope moving forward.
“To me this is inspiring,” said Clarahan. “I feel like I’m contributing to something bigger than me.”
If you’d like to make a donation, those can be made online at the Run 4 Dray website, or by making checks payable to Run 4 Dray or to Draysontate Children’s Cancer Research Fund. Please send the latter to 8311 Coyote Creek Drive, Peoria, IL, 61607. You can learn more about lipodystrophy and this related condition here. Meanwhile, follow Dray and his journey on Facebook.
