Maddie Kaufman’s family describes her as a sweet and spunky girl who is a friend to everyone. She brings joy wherever she goes. Maddie is always ready to make life fun, whether by throwing surprise parties for her family or preparing snack trays just because. She has a playful personality and loves spending time with her younger siblings, Makenna and Colton. She enjoys softball, swimming, and caring for baby kittens and puppies. Her favorite colors are purple and teal, and her family has always encouraged her to shine her light in everything she does.
On October 1, 2024, Maddie and her family’s lives changed when she was diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG. It is a rare and aggressive brain tumor with no known cure. At first, her family noticed she seemed more tired than usual. Then she started having trouble holding her fork and struggled to climb stairs. A visit to the doctor led to an emergency room trip, where a CT scan revealed a tumor in her brain. She was life-flighted to Children’s Mercy Hospital in Kansas City, where doctors confirmed the diagnosis.
The tumor affects Maddie’s movement, especially on her right side. Her right eye, leg, and hand have all been affected, and she lost total mobility in her dominant hand. At first, she could not walk independently, but after months of challenges, Maddie recently began walking again. However, she still cannot run or play the way she used to.
“She’s so brave and rarely complains about what’s happening to her,” her mom Andrea shared. “We are blown away by her strength and the way she still shines her light through it all.”
Maddie has found new ways to enjoy life while adjusting to her condition. She has developed a love for arts and crafts and is learning to use her left hand with amazing skill. She enjoys shopping, spending time with loved ones, and finding joy in small everyday moments.
Her symptoms have improved since she was diagnosed, but her journey is still difficult. Doctors put her on high-dose steroids during radiation, which affected her mood and energy levels. Fortunately, she has started acting more like herself again, which has brought relief to her family.
One of the biggest struggles is finding medical trials that might help. Since DIPG has no cure, families must look for experimental treatments, which often require travel. These costs add up quickly, putting financial pressure on the family.
Through everything, the Kaufmans have leaned on their faith in Jesus. They say this experience has made them more focused on heaven and the belief that life does not end here. They hold on to their faith and look for small blessings in each day.
“We’ve always put our hope in Jesus, and this diagnosis has forced us to live that out in a very real way,” Andrea said. “While this is gut-wrenching, we have never been more thankful for heaven and the promise that this life is not the end.”
One of the hardest parts has been watching Maddie’s siblings and other kids run and play while she cannot join them. She has lost so much, yet she rarely complains. Her determination and courage inspire everyone around her.
The Kaufmans have been overwhelmed by the kindness of their community. People have stepped up in ways they never expected. Fundraisers, cards, gifts, and kind words have helped them through the hardest moments. Organizations like The Cure Starts Now, SOSO, Tough2Gether, and Nora’s Sparkle of Love Project have been generous in offering support. Maddie receives care packages that brighten even the toughest days.
“The support from our community has completely blown us away,” her family said. “Every fundraiser, card, gift, donation, or kind word has meant the world to us.”
Those who want to support Maddie can donate through GiveSendGo at www.givesendgo.com/MaddieK. Kyla Partain is holding a Flower Fundraiser through Scentsy to help with Maddie’s costs as well. She can be found on Facebook at Kyla S. Partain. These contributions help with medical costs, travel for treatments, and other expenses that come with fighting DIPG.
Even as her family faces uncertainty, they continue to find strength. Maddie’s story is one of courage, love, and deep faith. Her family believes that no matter what happens, healing is ahead in one way or another.
“We are extremely hopeful for upcoming DIPG trials, but we know that healing comes for her at the end of this either way,” Andrea said.
Through it all, Maddie continues to shine her light. She remains a reminder of resilience, hope, and the power of unwavering support.
