CHICAGO (WBBM NEWSRADIO) -- Scott Kramer remembers the day his 2-year-old daughter, Maddie, was in the emergency room with strange symptoms.
"In April 2017, our world basically stopped. We had no idea as we were watching the symptoms unfold other than feeling raw terror," he recalled.
She would be later diagnosed with a rare form of cancer, a mass found on her spinal cord.
"Truly, just as you can imagine, a life stopping moment. She was a beautiful happy, amazing little girl. Maddie, for two and a half years barely had as much as a cold. No early signs. It's like getting hit by a truck without warning," Kramer said.
The Kramers ended up in the emergency room. Maddie had pain in her neck. Scott Kramer said her legs collapsed at triage and was soon paralyzed.
"Ultimately, the MRI revealed the mass was covering the inside of her spinal cord. That mass turned out to be something called ATRT that affects 30-50 kids in the United States per year. Only one to two percent appears on the spinal cord like Maddie's did," he said.
After a surgery at Lurie Children's Hospital to remove the mass and an aggressive chemotherapy protocol, Kramer said Maddie bounced back like a trooper.
"She not only survived the surgery, but she really defied all odds of post surgical recovery. The prognosis we were given, if she were to survive, it would be months of in-patient rehab just in hopes that Maddie might walk again. In two weeks, this amazing little girl was back to running, jumping, dancing, and singing within two weeks," he laughed.
"She then started a 52 chemotherapy protocol, an unheard of number and a very aggressive treatment protocol, but Maddie really faced her journey the way she lived her entire life and it was with a smile, with an innocence, and an inspiration, my wife and I will ever forget the rest of our lives."
Kramer said he and his wife tried to humanize what she was going through and allow her to understand it and keep dancing and playing and being a kid.
"She understood that there was a little ball in her neck called a tumor that her super doctor, Doctor Alden, an incredible surgeon here in Chicago, was able to take out and that she was going to take a special medicine called chemo to make sure the tumor doesn't come back," Kramer said.
But 8 1/2 months into treatment, Maddie passed away in January 2018.
Kramer admits it was unexpected, but it gave he and his wife Pammy a new purpose.
"It was a complete surprise. I didn't ever want to google her prognosis. It was really black and white. I didn't know the odds. We just focused on the presence and making her life great now. After she died, we literally in the ICU, I remember my wife and I looking at each and saying 'this is not the end,'" Scott recalled.
Just months after Maddie died, they created the non-profit, Dancing While Cancering, something he describes as "so Maddie".
"We knew we were going to do anything in our power to make sure that Maddie's life would be remembered as an inspiration. We wanted it to be 'very Maddie,'" he smiled. "We turned to fun. Our sole mission is to bring joy to the in-patient hospital experience for kids with cancer."
That's how Smile Packs were born, bright green backpacks filled with decorations and instruments for kids diagnosed with cancer.
"These are our Smile Packs. They are bright, neon green backpacks that we gift to all kids that our diagnosed with cancer with our partner hospitals," said Pammy Kramer, Maddie's mother.
"Every child upon diagnosis receives one of these Smile Packs and they are filled with items to bring joy and normalcy to their hospital experiences."
Maracas, streamers, blankets, disco balls, window clings, and wireless speakers are inside. There are three different backpacks, each cater to a different age range.
"We thought, what would Maddie want in her room? Every time we went to the hospital with her, the first thing I did was unpack a suitcase full of things to decorate the room. How do we make that hospital room a room she'd want to be in?" said Pammy Krammer.
"It's a little bit of Maddie's backpack in a bag," laughed Scott Kramer.
In just three years, Smile Packs are now in 20 hospitals in 14 states across the country, six being in Chicago.
The Kramers said their mission is simple.
"It's all items to remind newly diagnosed families to still hold on to those moments to smile. When life feels like life could get no lower, there will be still moments to smile and that the room is their own."
According to the Kramers, 1,500 children have received the Smile Packs. Something, Scott said, Maddie would be proud of.
"I like to believe she is smiling and shimmy shaking down on us and watching all the amazing things we're doing in her honor," said Scott Kramer.
The Kramers hope to keep growing the non-profit and reaching more young cancer patients throughout the country.
"We're sorta like Maddie, the little foundation that could," the Kramers said.
For more information, log onto dancingwhilecancering.org.
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