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December 17, 2016 — September 18, 2022

Last December, Meghan Scoggins noticed her 5-year-old daughter, Kenzie, seemed a little off balance. She’d recently started to complain of headaches, and she seemed a bit wobbly one morning as Meghan dropped her off to school. Meghan shared with Kenzie’s teacher that she had made an eye doctor appointment for the following day, but requested that the teacher call her at work if the odd symptoms seemed to worsen.

With an ominous feeling in the pit of her stomach, Meghan went to work. She was there less than 45 minutes when she got the call from Kenzie’s teacher that something just wasn’t right.  Meghan raced to pick up her daughter and drove her straight to UNC Medical Center. After multiple tests and an MRI during an excruciating day in the emergency room, a doctor came into the room where Meghan and her husband, Dusty, waited, took their hands, and told them that Kenzie had a brain tumor.

“No amount of words can be used to express the amount of pain from that day or any of the following days,” said Meghan. “The words ‘currently no cure’ and ‘inoperable’ still live rent-free in our heads every day.”

After learning more about DIPG and the options available, Meghan and Dusty decided to fight however they could for their sweet, sassy little girl.

Through a friend, Meghan learned of the My DIPG Navigator program that the ChadTough Defeat DIPG Foundation had recently launched. This unique, free resource is designed to help patients and their families navigate their DIPG or DMG diagnosis with dedicated one-on-one help from experienced nurses. Through the program, the Scoggins family was paired with nurse Leslie Jared, who has been guiding them through their pediatric brain cancer journey.

“Leslie and DIPG Navigator have been a guiding light and a saving grace. Starting this journey I was able to be in touch rather quickly and I can honestly say it changed our fight for the better. Leslie cares for these families and I’m thankful for her,” Meghan Scoggins.

To combat the DIPG, Kenzie first received radiation treatment, which is the only current standard of care for DIPG, and is currently enrolled in a promising Car T-cell trial led by Dr. Michelle Monje of Stanford University. During the trial, Kenzie’s own T cells are removed and then genetically reengineered to attack her cancer cells. The warrior cells are infused back into Kenzie’s body, after which she is closely monitored.

”While acutely aware of the dire statistics surrounding DIPG, with only 2% of patients surviving at least 5 years, the Scoggins family held onto hope right until the very end. Kenzie is a hero and fought hard, gaining her angel wings on September 18, 2022.

Kenzie is sunshine, rainbows, and everything this world needs. I am so sorry life dealt her this hand, but she is truly the best thing that has ever happened to her daddy and me. We will continue to fight for her,” said Meghan.