'Love For Maggie': Thousands Rally Behind Girl With Brain Tumor

FRANKFORT, IL — Maggie DeVries is 5 years old. Her and her family live in Frankfort, recently moved in from Tinley Park. There are many things about Maggie that are similar to other children her age. She's active in gymnastics. She enjoys being part of a cheer team. She's excited about being a Daisy in her local Frankfort Girl Scout Troop. She's a big sister to her 2-year-old brother, Patrick. And she has a family that loves her very much.

But Maggie has one thing that most other children don't have: a rare, inoperable brain tumor located in her brain stem. The brain stem controls functions such as breathing and heart rate, according to information from St. Jude Children's Research Hospital. It also controls the nerves and muscles that help people see, hear, walk, talk and eat.

Maggie's condition is called diffuse intrinsic pontine glioma, or DIPG. It is so rare that only about 200 to 300 children per year are diagnosed with DIPG, according to a medical paper published on the National Center for Biotechnology Information website.

The NCBI places the median survival rate for DIPG at just nine months.

"From There, Everything Kind Of Fell Apart"

Maggie's first showed a symptom of DIPG on Jan. 15. She woke up with one of her eyes crossing in. Her parents, Erin and Pete DeVries, first attempted to make an appointment with an eye doctor, but was told she wouldn't be able to be seen until the end of the month.

But something about Maggie's eye wasn't sitting well with Erin and Pete, so they booked an appointment Jan. 17 with Maggie's pediatrician. The DeVries family was told to get Maggie in for testing at the emergency room, and they needed to do it right now, Maggie's aunt Libby Tiffy said.

"From there, everything kind of all fell apart," Tiffy said.

Maggie's DIPG diagnosis came quickly after. The family started going back through photos and videos from the previous week — Maggie in her Daisy uniform, beaming with pride as she modeled it — to see if there was something there that they had missed, some sign that Maggie was ill. There was not.

"It feels like to us, it came out of nowhere," Tiffy said.

"In three days, everything just changed. Everything," said Maggie's grandmother Bridget Lorenz, also affectionately known as G.G.

"A Silly Spot On Her Brain"

Maggie, understandably because of her young age, isn't quite fully aware of what is happening to her. Doctors at Ann & Robert H. Lurie Children's Hospital of Chicago, where Maggie is currently undergoing a clinical trial for treatment, have explained the tumor as "a silly spot on her brain."

The doctors have explained to Maggie that this is why she has to come in to see them, to go through tests and procedures, to have her 5-year-old life interrupted.

But, despite the tumor and doctor visits, Maggie continues so far to be quite active. She was even showing off in a video Tuesday doing handstands and just being a kid, Lorenz said.

Maggie's medical team has encouraged this, Lorenz said. They have advised the family to continue to allow Maggie to participate in all her regular, rambunctious activities.

"That's what the doctors said: 'Let her do whatever she wants to do,'" Lorenz said. "If she wants to go to cheerleading, let her go to cheerleading. If she wants to go to gymnastics, let her stay in gymnastics. Let her do what she can do for as long as she can do it."

That includes dance classes at Stage Door Dance Academy in Oak Forest, gymnastics at United Gymnastics Academy in Frankfort, cheering with Cheer City in Frankfort and activities with her Frankfort Girl Scout Troop #75897, where Maggie recently sold 200 boxes of Girl Scout cookies.

"Love for Maggie"

Maggie's story is heart-wrenching, to be sure. It has captured thousands of people's attention, including this journalist's. When I first became aware of Maggie's story, I immediately wanted to know what I could do to help, as I'm sure many of you, dear readers, are wondering, too. It is my hope that, with this article, together we are able to help spread some awareness of Maggie's story and the plight the entire DeVries family is under.

A GoFundMe account — called "Love for Maggie" and started in the DeVries family's name by close family friends Carrie and Teren Sapp, of New Lenox — has raised more than $115,000 from nearly 1,500 donations in just four days.

Many, many others have already showed a tremendous outpouring of support for Maggie and the DeVries. Simply Slices, in Mokena, has a standing order that gives Maggie and her family as many slices of her favorite pizza and grape shaved ice as she wants for as long as she wants. No charge.

Mariano's, in Orland Park, has given Maggie cookies, flowers and balloons, and four cases of strawberries. No charge.

United Gymnastics Academy, at both its Frankfort and Tinley Park locations, are holding an open gym fundraiser from 6:30-8 p.m. Sunday for Maggie.

A Valentine's Day card drive, started by the Sapp family, has been circulating across social media, asking anyone who cares to make and send Maggie a special card or gift. People can drop off cards and gifts at 1123 Green Glen Court in New Lenox.

There's a Facebook group, "Love for Maggie," that is selling decals, yard signs, and apparel for youth and adults. All the proceeds go to the DeVries family.

And there are many, many more people on social media sharing Maggie's story and helping raise awareness. For that, the DeVries family is eternally grateful, Lorenz said. The money and goods being donated are allowing the family to spend as much time as they have left with their daughter, sister, niece, granddaughter, who will be 6 in May.

If you're reading this article and Maggie's story has touched you as much as it has touched so many others, please consider making a donation, any kind of donation, be it monetary or with a card or note to let Maggie know she is loved.

"We just want to give to her and love her. We don't want her to want for anything," Lorenz said. "We just want her to have a smile on her face for as long as we can."

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