Meet Julianne Rongey

Julianne "Jules" Rongey is a very energetic and outgoing 10 year old girl from Arlington, Texas. She is the fourth child out of 6 in her family. She loves interacting, communicating, and just getting into the vibe of good friends and her beloved siblings. Jules loves the colors royal blue and purple, anything chocolate, enjoys music from all genres, the iris flower, and playing Uno Flip and Papa's Cupcakeria.

She loves being in musical theater plays and has perfomed with roles in The Lion King, The Wizard of Oz and Seussical. She loves watching anime and playing video games. When she’s in a more mellow mood, she enjoys working on LEGO kits and coloring in ultra-detailed coloring books. She is a water baby and loves swimming and the ocean.

Jules was diagnosed with DIPG on December 12, 2020 and bravely battled this disease for 11 months. Throughout her journey, Jules went through two sessions of radiation and was on a ventilator in the PICU twice. She was also treated with ONC201, Avastin, and Avapritinib; a new drug for stomach cancer that targets a particular mutation her tumor expresses. They were hoping to get Jules into an open spot in the CAR-T Cell trial at Seattle Childrens Hospital in the fall of 2021, but were unable to do so. Instead, they took her to New York for a potential trial there, but unfortuntely her tumor had grown and progressed too much for her to participate. Julianne was healed in Heaven from DIPG on November 15, 2021.

For most of Julianne's journey she was wheelchair bound, but her attitude was always amazing and she worked hard every day to gain strength and start walking again. Jules' strong faith helped her remain calm and positive in the face of her storm. Their family experienced so many miracles and knew that God was carrying them through their battle with DIPG.

Jules' family cannot put into words how thankful they are for the beautiful families they met over their 11 month DIPG fight, many of them all too familiar with what they are going through. The outpouring of love, prayers, and service kept them hopeful and sane.

Financial donations from organizations such as the Noah Brave Foundation allowed them to focus their energy on Jules and her treatments and to seek out the best treatments for her, even if it meant traveling halfway across the country. Her family continues to grieve with hope knowing the truth that Jules is alive in Heaven with Jesus and the beautiful promise that one day soon they will be reunited with her again.