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Our kids inspire us to fight to defeat DIPG.

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Carter Jones

For five-year-old Carter Jones, the DIPG monster came on fast and furious. His mom, Connie, vividly remembers the day of March 21, 2013. As Carter was getting ready for school that morning, “He just seemed off,” she said. While his temperature was normal and he said he felt okay, Connie’s intuition kicked in, and she knew something wasn’t right.

When she dropped Carter off at school, she asked that the teacher keep an extra eye on him. Connie was relieved to go through the day without hearing from the school, but when she came to pick Carter up, the teacher agreed that something wasn’t right.

The Jones family immediately took Carter to his doctor’s office. His pediatrician wasn’t in that day, so they saw the on-call doctor who assured Connie that everything was fine. The family was instructed to go home and rest, but as time wore on, Connie became more and more convinced that she had to take action. That night, she brought him to St. Joseph Mercy Canton Urgent Care, answering all of the same questions once again. However, this time the response was much different. While a lot of the day was a blur, Connie will never forget the look on the doctor’s face when he said, “Don’t panic. We are sending Carter to Mott Children’s Hospital by ambulance.” The urgent care center did not have the proper equipment to diagnose Carter, but his symptoms were telling a story that only the doctor could translate.

Once at Mott, the hospital performed an MRI and a CT scan. Around midnight, one of the many doctors they had talked to over the course of the day showed Connie the scan of the tumor and delivered the news that Carter had just 6-12 months to live. From then on, the life of the Jones family would never be the same.

In 2013, there were not many options available to treat and prolong the lives of kids battling pediatric brain cancer. The family enrolled Carter in a clinical trial consisting of both radiation and chemotherapy, but nothing could keep the DIPG monster at bay. It came at Carter with a brutal ferocity that kept him fighting for only six months. On September 16, 2013, Carter Jones gained his angel wings.

In the short time the family had with Carter post-diagnosis, they were dedicated to making every day as comfortable and joyous for him as possible. In spite of his quick decline, they were able to take him to Disney World twice that summer.

A few years later, a group of friends from the Joneses’ church heard about the RunTough for ChadTough event and decided to participate in honor of Carter. Connie herself ran the next year. Not long after, the company Connie works for, ASK Services, approached her and asked if she’d heard of the foundation. When Connie explained her history with RunTough, the company told her they were interested in getting involved with the organization as a way to honor Carter. The company, along with Connie’s fellow employees, had always been incredibly supportive during Carter’s battle, and were now ready to invest in the belief that no family should ever have to go through the horror that the Jones family endured.

As Connie continued to learn more and more about The ChadTough Defeat DIPG Foundation, she knew she wanted to become a Family Partner. “No matter how much time passes, there’s not an hour that goes by I don’t think about Carter. Every time I do laundry, I’m always missing his clothes. Every time we have dinner, there’s always an empty space. When Carter was diagnosed, there was no hope. By partnering with The ChadTough Defeat DIPG Foundation, we are contributing to the ability to give future families the hope that we didn’t have,” said Connie.

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

What is ChadTough Defeat DIPG?

Learn about our founders, mission, and impact.