A DIAGNOSIS AND A DECISION

It would take 14 years for the Leftwich family to get some answers. Finally, the genomics test revealed their son was diagnosed with NGLY 1, an extremely rare condition. In fact, Gage was only the ninth child in the world when he was diagnosed with the condition.

“The doctor was excited to tell us they found a diagnosis,” Greg said. “I asked, ‘What does that get us?’ But they said it doesn’t really get us anything. There is no cure. There is no treatment.”

With so little known about the condition, Gage’s parents took to the internet to try to find more answers. Only two articles appeared in the search, leading them to two other families who were living with the diagnosis. It wasn’t much, but it was something to cling to and led the couple to an NGLY 1 conference in San Diego. By the time they attended their first conference, 15 kids had been diagnosed. With Gage being one of the older children with the condition, Greg and Jen decided to allow Gage to undergo additional testing to find more answers for other families. “We chose to allow Gage to participate in testing because we knew he was helping other kids just like him.”

Gage participated in a National Institutes of Health study involving 32 appointments over the span of five days. His results would become baseline data for researchers moving forward. Greg explained that the research conducted since that trip has led to FDA approval of medicines curing childhood cancers and other unexplained diseases.

Meanwhile, Gage’s condition worsened. No closer to treatment options, the family focused on making their son’s last days as meaningful as possible. They created a bucket list of experiences that would bring the joy of togetherness with the family. They participated in triathlons and races, pushing Gage’s wheelchair or towing him behind them, and swam with dolphins. They committed to each other to keep the family strong physically and mentally. They lived by the motto “be sad later,” all while living a great story.

Gage was welcomed into heaven on April 23, 2022.

More Work To Do

Since the loss of their son, the Leftwich family has continued their quest to help others find joy in life. They attribute their ability to do so to the lessons they learned at Culver-Stockton and being raised in a supportive community of people who love and care for them and their families. They remain active in the community, giving back wherever they can and supporting other NGLY 1 families.

“We had 8,037 days with him. We are not going to get stuck on the one day that we lost him,” Jen said. “We think back on the happy times. We laugh a lot. We share stories.”

Despite the hardships Gage endured in his 22 years on earth, Greg and Jen said he was never without pure joy. They plan to celebrate and continue spreading what their son has inspired them to do.

“You have to realize that you’re only here for a short time. You can either be unhappy during that short time, or you can choose positivity and happiness,” Greg said. “You don’t have to go travel the world

It’s being part of the community and finding your community. Stay with people who bring out the best in you. Keep relationships healthy. Have a happy life and live a great story.”

Wildcat Legacy

Greg and Jen shared that having both sets of grandparents close to them when Gage was born was helpful for many reasons. Three children and one with a disability was a lot of responsibility, but the parents worked out of the home, so they were thankful for the family support. “When Gage was born, we knew we would need more help, but we found that our parents would come over because he was the happiest kid in the world!” Greg laughed, “Everyone wanted to spend their day with Gage.”

The Leftwich children grew up with a unique affinity for Culver-Stockton College as time passed. Both grandparents were located in the area, providing additional cultural events opportunities. “My dad was a man of great purpose and always tied to the mission; he loved Culver-Stockton College.” Jen said with a smile. Historic moments on “the Hill” for the Leftwich family on campus include naming of the Robert W. Brown Performing Arts Center, ribbon cutting ceremony at Carolyn L. & Robert W. Brown Residence Hall and most importantly, the day Taylor was presented his C-SC diploma from his grandfather.

The Leftwich family are Wildcats who are leaving a legacy, while nurturing the community ties. Jen was recently on campus at a scholarship luncheon with her mom, Mrs. Carolyn Brown meeting a scholarship recipient to tell about the Brown family legacy. Both Greg and Jen can be seen marching in the homecoming parade with the Canton Alumni Band. One thing can be certain: this couple is on a mission to live a great story.

STUDENTS MEET THEIR DONORS AT THE SCHOLARSHIP LUNCHEON:

Providing our students of promise the tools they need in an ever-changing world does not come easy. Many uncertainties surround higher education these days, and while many institutions stumble, Culver-Stockton College continues to thrive. Investments in our endowed scholarships help provide new possibilities for accessible and equitable rural higher education. Each year over $700,000 in endowed scholarship support is awarded. A Culver-Stockton education, for countless students, is made possible by those supporters who have created an endowed student scholarship. The following are a few of those donors, pictured left to right:

For more information on how you can make a difference for Culver-Stockton College students by creating an endowed scholarship, contact the Advancement Office at advancement@culver.edu.

TO VIEW PHOTOS FROM THE SCHOLARSHIP LUNCHEON AND OTHER C-SC EVENTS