Have you ever heard of something called DIPG? It's a monster that targets children.
To date, this specific pediatric brain cancer has 'never' lost a battle. But, out of that utter despair, families one by one are picking themselves up and joining forces.
Their battle plan? Spread awareness, which leads to funding for research. That is key to finding a cure and slaying the beast that is DIPG.
Markie Stendardo was living the dream on Aug. 15. At 11 years old, he was throwing out the first pitch at a Phillies game.
His mom, Mina Carroll told us, "Other than getting to see Markie throw out the first pitch, the most important part of the night was the fact that we got two minutes on the jumbotron. That's two minutes to reach potentially over 60,000 voices."
Those are voices she hopes will rise on behalf of Markie's little sister, Philomena, and so many other children.
As thrilling as that night at the ballgame was, what landed them there was something Philomena's family could never have imagined back in the days when falling off the bed was the biggest worry, or perhaps getting hurt playing the sports, at which she excelled.
"When she hit the ball, the ball would just explode," said her father, Mark Stendardo.
As summer waned in 2016, so did something about Philomena.
"She was an amazing athlete, and we just noticed that she didn't have the skill that she normally had and was a little off balance," her mom said.
Her dad said, "At practice, she just wasn't aggressive. And then we get into school, her writing was a little off
So was her walking. She fell on the way to school, landed at the doctor's, then at Children's Hospital of Philadelphia, where an MRI imploded their world.
"They came to get Mark and I, pulled us out of the room. And we could tell by the way that everyone else was looking at us that there was something really wrong," her mom said.
"We didn't know what DIPG was. We didn't know it was on her brainstem. They knew. We didn’t know, you know? The worst day of my life," said her dad.
DIPG is a type of glioma, the brain cancer that killed Sen. John McCain and Phillies legends Darren Daulton and Tug McGraw.
"She had the worst type of glioma in the worst possible place," Philomena's mom said – the brain stem.
"We were forced to watch her deteriorate, sometimes by the second. You know, DIPG is especially horrific," she said. "… It takes away the child's ability to walk, talk, smile and eventually breathe."
Yet, like ALS, they're aware of everything that's going on around them.
"That kid never complained," her dad said. "She went from – I tell people, think about this – she went from being a great athlete to doing a biopsy on her to being paralyzed on her right side. Totally paralyzed."
Markie and Philomena, 18 months apart, were two peas in a pod. FOX 29's Lucy Noland asked if it was OK to talk with Markie about his sister. His parents said yes.
"She was very strong," Markie said, before he began crying
"This is another reason why we have to fight, for those who are left behind," his mother said. "I would beg God every day not for me. Don't save her for me. Save her for him."
Lily LaRue was a "twin" to her best friend, Brady Cooper. Lily lived 11 months and two days after her DIPG diagnosis. She was 6 years old when she left this earth and her family behind.
Janessa, nicknamed "Nunuz," loved Disney princesses. The little girl with the big smile was diagnosed with DIPG on a September day in 2016. She lost her battle 13 months later. Nunuz was 8 years old.
Molly loved animals and sharing funny stories with her five brothers and sisters. Diagnosed with DIPG when she was 11 years old, she fought for 18 months and, as her family says, went home to the Lord when she was 13.
Marlee, a vibrant 8-year-old, was full of life. Her DIPG diagnoses came shortly before Christmas. She gained her wings a little more than 12 months later, forever 9 years old.
"When your friends with these people, they see your story," said Philomena's dad, Mark Stendardo said. "Now people start requesting you and asking you for advice. And, you know, the thing is, it's 0 percent. There's nobody that beats this thing. So, you know it’s coming. And when you see that, they're asking these questions, you're like these people don't even have an idea of the tidal wave that's gonna hit them."
No cure exists. Radiation is the only treatment. And it buys very little time.
For 10 months, 7-year-old Philomena battled DIPG. Her Make-a-Wish? Meet God, or Jesus.
"Her third choice was Mary, our Blessed Mother," said her mother, Mina Carroll. "She really was remarkable. And, again, I said 'No, pick someone here on Earth.' And she said, 'The pope.'"
So, she did, at the Vatican.
It was in Lourdes, France where her family thought they were witnessing a miracle. In Lourdes' water every day, Philomena was running again, including in video shot on February.
"The miracle wasn't her being cured," her dad said. "The miracle was what she's doing to bring people together, and we're going to be able to find this cure."
Five weeks after video shows her wishing her dad a happy Father's Day, Philomena's time on Earth came to a close.
"Storm the Heavens Fund" is Philomena's legacy. It's funding research to find a cure for a cancer with a zero-percent survivability rate.
"Storm the Heavens is about doing what God wants us to do, treat people the way we want to be treated," her mom said. "Save each other. … The problem with DIPG is that it's on the brainstem, and there is no wiggle room for surgery."
That's what Dr. Charles Keller and his team at Children's Cancer Therapy Development are trying to solve.
"What could make tumor cells migrate to the side?" Keller asked. "What if we said as biomaterial experts, 'What could trap cells in?'"
Think sticky paper that attracts and captures cancer cells that a surgeon could then safely remove.
"I call it the 'tumor cell hotel'… where tumor cells check in but they don't check out," the doctor said.
Private funding because only 4 percent of funding for federal funding cancer research goes to pediatric research.
Keller pointed out that, since 1978, the FDA has approved merely six drugs for children battling cancer, and none target brain tumors.
"So, that's six in 40 years for kids, 12 every year for adults," Keller said.
Philomena's mom added, "It's not a matter of whether we can. It's whether or not we're willing to give it the resources. And if somebody would have done the right thing 50 years ago, when Neil Armstrong's daughter, Karen, died of DIPG, then I'm confident that Philomena would still be here, and so would Marlee and Janessa and the nine other local children who have lost their battle to DIPG since July 2016."
Below are links to learn more about DIPG, "Storm the Heavens," the other families' foundations, and how you can help.
Diffuse Intrinsic Pontine Glioma resources: