BY KAREN GERHARDINGER | MIRROR REPORTER — When 11-year-old Emily Scholz started having vision and balance problems, her mom thought it was just due to a growth spurt.
“She’s grown 4 inches in the past year. I figured she was just like a puppy growing into that extra body,” said Sarah Carnes.
What started as a visit to the optometrist and pediatrician led to an appointment with pediatric ophthalmologist Dr. Robert Rhee, who sent Emily to the University of Michigan. It was a team at UM that broke the news: Emily has diffuse intrinsic pontine glioma (DIPG), a highly aggressive and difficult-to-treat brain tumor on an area of the brain called the pons, which controls many of the body’s vital functions, such as breathing, blood pressure and heart rate.
Since that March diagnosis, Emily has had 16 rounds of radiation – and an outpouring of support from the community.
Sarah’s friend Desirae Dzierwa is organizing Round Up for Emily, a fundraiser on Sunday, May 15 from noon to 9:00 p.m. at Sweet Retreat in Waterville. Customers who mention Emily can have purchases rounded up to the nearest dollar to donate to help Emily’s family with medical and travel expenses.
Sidelines in Maumee is donating profits from sales on Friday, May 27. Speedway Waterville is also accepting donations. Sarah’s sister Kathryn Fynes is hosting an Emily’s Army GoFundMe campaign that has gathered almost $8,000 so far.
Last week, Emily’s team of teachers at Fallen Timbers Middle School wrapped up a fundraiser that sold 600 “Emily’s Army” T-shirts featuring a quote from Harry Potter character Albus Dumble-dore: “Happiness can be found in even the darkest of times, if one only remembers to turn on the light.”
Emily’s teachers at Fallen Timbers Middle School know her obsession with Harry Potter and boba tea. On Halloween, Emily – who is identified as part of the Harry Potter Ravenclaw House – came to school dressed in a full Harry Potter costume complete with wand.
Even though she’s only in fifth grade, Emily reads at an eighth- or ninth-grade level.
“She’s a talented writer and wants to write a book. She always has a smile and has kept a positive attitude,” said her teacher Megan Meiring, sharing several photos of the smiling redhead at school. “Emily is such a sweet girl, and we are so lucky to have her on our team this year.”
Emily has been back to school a few times since March, including a day when her Pathfinders team enjoyed a snow cone machine. Between the radiation treatments in Ann Arbor every weekday and the steroids, Emily is often exhausted and at times swollen and off-balance, so getting to school is a challenge. Yet she’s happy about getting cards from all of her friends at school and wants to go back.
“She’s got a pretty positive demeanor. She loves telling jokes and talking to people about Harry Potter,” Sarah said.
Emily did, however, read and understand her diagnosis, and is worried about the low survival rate. Catching Up With Jack founders Katie and Brady Fineske spoke with Sarah on behalf of their organization, which is dedicated to pediatric cancer research and patient assistance, about how to navigate with her family, which includes her husband Jeremy, Emily’s father Pat Scholz and younger siblings in both houses.
“We’re trying to live in the present,” Sarah said.
The family is thankful for the outpouring of support, including meals, gas gift cards and funds for medical expenses and updates to make Emily’s room brighter and to make room for a walker or wheelchair.
The GoFundMe limit has been raised a few times, and any leftover money will be split between two organizations that are funding pediatric cancer research: Catching Up With Jack and the ChadTough Defeat DIPG Foundation. Less than 4 percent of the federal government’s research investments go toward childhood cancer and even less for childhood brain cancer. Both of those organizations are working to change that. It’s a mission that Sarah shares – to increase awareness of DIPG and to raise funds for research.
For information on the GoFundMe campaign, go to https://www.gofundme.com/f/6z44rr-emilys-army.