Magic for Maddie

"We made every moment count and then some. We tried to squeeze a lifetime of love into months. We prayed desperately for a miracle.”

For the Schmidt family, February 22, 2022, is a day that remains fresh in their minds. It’s the day their world changed, and their perspective shifted. It’s the day their 8-year-old Maddie was diagnosed with an aggressive brain tumor, known as diffuse intrinsic pontine glioma (DIPG). And, it’s the day they began their 10-month fight in hope of a miracle.

Creating Magic and Memories

“We were blessed to be Maddie’s parents. I feel like the world was a better place because she was in it, even though it was only for eight short years,” shared Maddie’s mom, Nora. “She was really one of a kind. She would light up a room the minute she walked in and built bonds with everyone she met.”

She was also a fighter. She battled DIPG, despite it impacting her vital bodily functions and the knowledge that the survival rate was virtually nonexistent for patients who receive this diagnosis.

To help raise funds for a clinical trial and support the family during this difficult time, they began Magic for Maddie, a 5K held at Holyoke’s Ashley Reservoir. Maddie had participated in a Turkey Trot during Thanksgiving the year prior with her family at Lake Sunapee. Despite being just 7-years-old, she completed the 5K, keeping up with her Mom the whole way.

“We knew we wanted to give Maddie something to look forward to and creating our own 5K felt like it just made sense,” said her aunt, Jenn. “We needed to give Nora, Greg, her brothers, and Maddie that feeling of a powerful community behind them, supporting them.”

With more than 2,000 walkers in attendance, Maddie and her family certainly felt the love and support of her community.

Nora shared that the following Thanksgiving after the first walk, Maddie was becoming very ill and wasn’t able to speak or walk, but she could communicate with a head nod. Nora had suggested to Maddie that they stay home in the warmth while her family ran the Turkey Trot 5K.

“Maddie shook her head no and I said ‘do you want us to push you this year?’ and she nodded her head yes, so her dad Greg pushed her the entire race because she didn’t want to miss it,” shared Nora. “That was Maddie’s personality – she would push through and she would do the hard things. She wasn’t going to miss it just because she couldn’t run.”

Meeting her Pedi Pals

During her care, Maddie’s family began to work with the Baystate Health Pediatric Palliative Care team. Palliative care is a resource available to families who have a family member, ages birth through 22, facing an illness that significantly lowers the normal life expectancy. The care includes services such as pain and symptom management, counseling, child life services, music therapy, and massages to help families and those around them navigate their experience. For the Schmidts, social worker Kate Kreider, LICSW; music therapist Tim Doak, MT-BC; child life specialist Bridget Moskal, CCLS; and assistant program manager Margie Luna, RN, become an extension of their family.

“From the moment we spoke with them, they were this force of kindness and compassion,” said Nora. “They wanted to know about Maddie, they wanted to know about her brothers Will, Patrick, and the cousins. They genuinely cared about Maddie and about all of us.”

The Pediatric Palliative Team worked with those around Maddie – from her family to her classmates – to help support them and guide them every step of the way. They also went above and beyond for Maddie and her family.

Maddie was rushed to the hospital on Christmas Eve in 2022, days before she passed way. Nora shared that Kate showed up to help get the paperwork rolling and be there to support the family, unprompted.

“We didn’t call her or ask her to be there, but there she was. You could just feel how much she cared beyond this just being her job,” said Nora.

At one point, Tim called Jenn and asked if she thought the family would like for him to record Maddie’s heartbeat and play it over a special song – “Halo” by Beyoncé.

“It was so beautiful, and that song means so much to us. We played it during her Celebration of Life, and we played it a lot when she was a baby – she would sleep to it – and when you listened to the words, it’s just like “oh my God, this is Maddie’s song’,” shared Nora.

Spreading Maddie’s Sparkle

The world lost Maddie on December 31, 2022, but the memory of Maddie lives on through the efforts of her family and community.

At Maddie’s Celebration of Life, Greg shared that Maddie had a sign in her room that read: “she leaves a little sparkle wherever she goes.” He had walked by that sign hundreds of times, but the week that she passed, he walked past the sign and it hit him – that was Maddie. She truly left a little sparkle everywhere she went.

Now, through Magic for Maddie, that sparkle is extending to Baystate Health, as the group has made a generous donation to support the Pediatric Palliative Care Program, ensuring that families have access to the same resources they did to make connections and receive support from the team and other families going through similar situations.

“We want to find ways to carry her with us and the Pediatric Palliative Care Program allowed us and the kids to be together as a family and do that,” said Jenn. “It’s been important to us to turn that pain into power and into purpose.”

That purpose will impact many families, according to Pediatric Palliative Care Program Manager Michele O’Neill, LICSW, CCLS.

“The funds will allow us to amplify our family engagement programs, which provide opportunities for families to connect with each other,” shared Michele. “We often hear that families feel isolated when they receive these types of diagnoses, so these events allow them to create natural supports with others who are having similar experiences. Building that camaraderie is such a powerful tool in improving the quality of life for patients and families.”

In eight short years, Maddie Schmidt has touched the lives of so many. And her legacy will continue through the efforts and dedication of her family as they turn their pain into purpose and leave a bit of Maddie’s sparkle in all our hearts.