Sophie Varney was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) in late December of last year. She’ll be 15 in May as she closes out her freshman year of high school. She has a 4.0 GPA, takes four advanced classes per semester, and was her grade’s Homecoming Princess this year.
“She’s popular, funny, and sporty,” her mom, Kim Varney, says. “Not only has she maintained her 4.0 GPA since her diagnosis, Sophie made the JV softball team and has started every single game.”
Sophie has played competitive softball for much of her life – and her club softball coach is the reason doctors were able to diagnose her with DIPG. A slight movement of her head to the left to see the ball when she was swinging – that’s all it took. Her coach advised her parents to have it checked out “just in case.” Shortly after, doctors found the tumor.
After her diagnosis, the softball community rallied around Sophie. Her travel coach organized a fundraiser shortly after she was diagnosed. Three thousand people attended and raised money for Sophie’s treatment. Her current travel softball team, Elite out of Grand Rapids, continues to host fundraisers to support her, dedicating a page on their website as “Sophie Varney’s Fundraiser.”
At the beginning of each game, her softball team passes out #SophieStrong wristbands to the other team. “One time, one of the coaches on the other team came over and said she wanted to meet her. And she just told her how strong she was and how amazed she was by her. It’s just such a tight-knit community,” explains Kim.
Not only have her teammates, other softball teams, coaches, and others in the softball community rallied around Sophie, her influence has reached as far as the University of Michigan women’s softball team. They invited Sophie out for dinner and gifted her with a personalized jersey.
With the diagnosis came devastation. “It’s such a shocking diagnosis,” her mom explains. “But we just hope and pray that this medicine and experimental trial continues to work, and that they keep fighting to reverse this prognosis and develop new treatments.”
“Sophie is in the middle of a clinical trial that is only available at four hospitals,” Kim Varney explains. “The only reason she’s here is because of the Carr family. During her treatment, we’d pick her up from school, shoot over to Ann Arbor for her treatment, and come back home in time for dinner. It was so important to us to keep things normal, for her to stay in school, to play softball, and to keep on living like normal.”
Since starting the experimental treatment, there has been an 18 percent reduction in Sophie’s tumor. If it continues to shrink, Sophie will continue her ONC 201 trial at Michigan Medicine.
A team of researchers at Michigan Medicine received a $429,000 grant on April 1 from the National Institute of Health (NIH) to implement an innovative gene therapy on mice in an attempt to find a cure. It is the first grant that the NIH has awarded for DIPG-specific research. Some of the leading researchers on this project think a cure could be as close as 3-5 years away. The Chad Carr Fund at Michigan Medicine, along with the Happy Hearts Foundation, donated initial seed grants allowing Drs. Maria Castro and Pedro Lowenstein to begin their research.
“The Carr family made the ultimate sacrifice. Without them, none of this research would have even started with DIPG. Sophie would have had to leave school to go somewhere else to do an experimental trial,” Kim says. “Instead, Sophie gets to stay in the comforts of her home, surrounded by her family, with some of the best treatment in the country right in our backyard.”
Sophie is done with radiation for now and continues on the experimental drug. Without the dedication of family foundations like The ChadTough Foundation joining this fight to shed light on the importance of developing new treatments for pediatric brain tumors, Sophie might not have had an opportunity to receive this experimental treatment while maintaining her school and home routine. From the researchers at the University of Michigan, to her dedicated teams of doctors, to her softball teammates and family – all are fighting to eliminate the devastation of this diagnosis for kids like Sophie. #SophieStrong
Author: Alexa Austin