ELias’ Legacy
On July 11, 2016, Elias Carter Dukes, a handsome, bright-eyed, baby boy was born. At 6 weeks of age, he was diagnosed with a rare, genetic, neurological condition called Neurofibromatosis Type 1 (NF1), which causes tumors to form along nerves anywhere throughout the body. Elias had been followed, since his diagnosis at 6 weeks old at UNC Chapel Hill, by a variety of medical providers and specialists, both locally and at UNC, for his NF1 and had obtained several frequent NF checks and scans.
Outside of his diagnosis, nothing stopped him! Elias was an athlete to the core and was willing to try any sport. He played Football, Basketball, Baseball, Soccer and participated in Taekwondo, but his love for Football ran DEEP!! Elias also enjoyed playing outside with his friends, riding his bike and electric scooter, going swimming, climbing rock walls, jumping on his trampoline/going to jump parks, and riding ATVs. Elias loved the Lord and was very active in his church, Willis Creek A.M.E. Zion. He served as an Acolyte, Drummer, Jr. Greeter, Children’s Choir Member where he led several songs, and Jr. Audio-Visual (AV) Team Member. Elias was led to preach. He preached his first and final sermon at church on January 19th, 2026, which was entitled, “I’m Still Free.” Very fitting!
On May 21, 2024, Elias, now 7 years old, went for a scan at UNC. That was turning point. A tumor was identified that was typical of NF1 and the medical advice was to “watch and wait” because of a variety of reasons: it was inoperable due to location, he was asymptomatic, NF1 tumors are usually benign, NF1 tumor growth tends to slow down during the second decade of life, and it the tumor appeared to be growing very, very slowly. Elias Mom obtained second and third opinions over the course of several months from two other major hospitals specializing in NF1 and pediatric brain tumors. The medical advice given by the two other hospitals was to “watch and wait.”
July 8, 2025, Elias became symptomatic. After a scan and a meeting with the medical team on July 9th, 2025, our lives changed forever. On July 11, 2025, his 9th birthday, Elias had his first brain surgery from that day forward, we affectionately called him our “Champ.”
Over the course of several months, he endured 2 brain surgeries, 2 rounds of radiation, and 2 types of chemotherapy. He took lots of medication, attended multiple medical appointments and received several scans. The words “Diffuse Midline Glioma (DMG)”, a rare, aggressive, pediatric brain tumor became a part of the scenario, and in spite of it all, Elias still kept the faith. He still remained mentally strong and as physically strong as he could. He still had hope. Elias courageously battled Neurofibromatosis Type 1 (NF1) and Diffuse Midline Glioma (DMG) with a bravery that touched everyone who knew him.
As written in 1 Samuel 1:27, “For this child I prayed, and the Lord has granted me what I asked of Him.” Elias was that prayer answered—a gift, a joy, and a love that will never fade.
On May 1st, 2026, he became our forever “Champ”. Though his time here was far too short, his life was full of purpose and meaning. His laughter still echoes, his love still surrounds us, and his spirit will live on forever.
Our Donation Story
Elias’ Dad and I sat in a hospital room surrounded by members of his medical team as our sweet SONshine, our CHAMP, our FIGHTER, lay connected to machines that were doing the work his little body no longer could. In that sacred and heartbreaking moment, we were asked a question no parent ever expects to hear:
Would you like to donate Elias’ tumor tissue to research?
As I processed those words, my mind immediately replayed Elias’ journey. From beginning to end, the one thing that never wavered was our faith and our trust in God.
Elias loved the Lord with his whole heart. He prayed for younger friends in treatment who didn’t have the voice to pray for themselves. He prayed for adult friends in treatment who were losing hope and whose faith needed a boost. He experienced good days and incredibly hard days. There were early mornings, long hospital nights, painful treatments, and countless unknowns.
Yet through it all, he kept smiling. He kept everyone laughing. He was a light that naturally drew people in. Elias poured into everyone around him, always thinking of others before himself and never asking for anything in return.
So the question became: “What would Elias do?”
The answer was easy. Elias would give.
He would want his tumor tissue to help researchers learn more, discover better treatments, and perhaps one day save another child’s life. That was simply who he was.
Our favorite Scripture—one Elias memorized perfectly—is Proverbs 3:5: “Trust in the Lord with all your heart, and lean not on your own understanding.” We may never fully understand why Elias’ journey ended the way it did, but we trust that God is still working. We pray that this gift, along with the work of researchers around the world, will help move us closer to better treatments and, one day, a cure.
That is one more way we can continue to Live Like Elias.
#LiveLikeElias #FaithStrengthHopeCure #EndDMG #Proverbs3v5
Forever Loved. Forever Missed. Forever 9.
Live Like Elias Foundation, Incorporated was founded by Kristen, Elias’ Mom, to honor his life and carry forward the extraordinary legacy of faith, strength, kindness, love and joy that he shared with everyone around him. Inspired by the way Elias lived each day, the Foundation advocates for families navigating Neurofibromatosis Type 1 (NF1) and pediatric brain tumors, supports children facing these diagnoses, and invests in pediatric brain tumor research to bring hope, improve outcomes, and help advance the search for a cure.
To learn more about the Foundation, get involved, or make a donation, please visit www.livelikeeliasfoundation.org.
