ANN ARBOR – Scott and Pammy Kramer lost their three-year-old daughter, Maddie, to a rare form cancer in January 2018.
Months after her passing, they decided to establish donations to various pediatric hospitals in Maddie’s name to help other patients battling childhood cancer have a more positive experience.
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Maddie was diagnosed when she was 2.5 years old and her father said amid the sudden isolation from family and friends and increasing hospital visits, Maddie would bring along bags of her favorite toy characters and find comfort in imaginative play.
“Literally the first person that Maddie talked to out loud and verbalized her diagnosis that she had a tumor and that her ‘super doctors’ took out her tumor was a conversation with Peppa Pig,” said Kramer. “It made us realize she was processing the messages doctors were sharing with her.”
Kramer said Maddie was a vibrant little girl who loved to dance and brought light to every room and situation. He said she handled her treatments with such positivity and innocence, and that he and his wife wanted to bring joy to the inpatient experience.
“There are so many Maddies out there,” said Kramer.
The Chicago-based couple established Dancing While Cancering in the fall of 2018 and began distributing smile packs to children who receive a cancer diagnosis. Smile packs are backpacks that contain items to decorate the patient’s room and a small speaker so children and their family members can enjoy dance parties.
Soon after, the Kramers established Maddie’s Character Closets and began sending boxes of toy character families to pediatric oncology wings around the country.
When choosing which hospitals to donate to, Kramer said he and his wife felt University of Michigan’s C.S. Mott Children’s Hospital was an obvious choice, since they both attended U-M as undergrads and met in Ann Arbor.
“Coming back to Ann Arbor was very important to us,” he said. “As a freshman I was at Markley so the hospital was right outside my window and I volunteered at the hospital as a student. We went back and launched our program at Mott on our anniversary.
“Since we launched Maddie’s Character Closet program, we’ve gifted to Mott over 60 character families. Mott is amazing. The child life specialist team (there) is above and beyond.”
Kramer said 11 hospitals around the country now have Maddie’s Character Closets for their patients to enjoy, and that more than 1,300 smile packs have been delivered to 21 partner hospitals nationwide.
“The legacy Scott and Pammy have created for Maddie is so inspiring,” said certified child life specialist at Mott Lydia Paradysz. “To be able to bring joy to not only our activity room but to their bedsides is such a nice thing to see throughout their stay. The Character Closet is probably the most popular thing in our activity room -- it’s literally like a toy shop.”
Paradysz said when the pandemic hit, patients undergoing treatment at Mott became more isolated than ever before. At one point, she described a temporary policy in which each child had to choose only one parent to stay with them.
During such trying times, Paradysz said having the character closets available for patients to play with both in the activity room and in their own personal rooms was a game changer. Additionally, she said the Kramers have answered the call each time Mott asks to add more characters.
“They have done so much, they have never told us ‘no’ and they’ve always been there every time we’ve asked for something,” she said.
Kramer said he and his wife run the formal nonprofit. It’s purely a volunteer effort, and all money raised goes toward providing hospitals with toys and smile packs. He said the support has been overwhelming and that the organization raised tens of thousands of dollars during a 26-hour “Smileathon” on Maddie’s birthday on June 26. He said the ongoing support is a testament to Maddie.
“She was amazing,” he said. “As much as those moments in the hospital were some of our worst in our lives, they were also some of the best moments of our lives.”
To learn more, visit www.dancingwhilecancering.org.