Share

Madelyn (Maddy) Didio was a gritty, fierce and sassy baby girl. Her favorite things were her twin sister, being with her mom and dad, and bows and her pacifier, Rupert. When she was just four months old, Maddy started experiencing symptoms of constipation, fussiness and she had bluish, little dots on her stomach. Her parents, Jackie and Dan, knew something was wrong, and a visit to urgent care and the emergency room led Maddy to be diagnosed with a rare form of Acute Lymphoblastic Leukemia (ALL), known as infantile leukemia with the genetic variant KT2MA.

After 40 days living in the hospital and getting testing and frontline treatments, Maddy’s disease was determined refractory and very aggressive, and a new roadmap would need to be created, and fast. Her family moved from the DC area to Philadelphia to receive aggressive chemotherapy, immunotherapy and CAR T-cell therapy at Children’s Hospital of Philadelphia. The only reason they could move was because of Dan’s health insurance and their immense support of family and friends along the way. Maddy and her family experienced so much joy together, even through the pain of treatment and uncertainty they faced. Their care team was like family and for that they are forever grateful. 

Maddy’s leukemia worked its way around the treatments, and she even developed a solid leukemia tumor and needed radiation. Right before she was supposed to get a bone marrow transplant with her twin sister’s cells, her disease made the rare and deadly switch from ALL to Acute Myeloid Leukemia (AML). 

After trying new trials, switching hospitals again and ultimately coming back to Philadelphia, Maddy died on August 13, 2022 at 14 months old. Following her death Maddy’s parents founded the Madelyn James Pediatric Cancer Foundation, and they are committed to improving access and equity in pediatric cancer care. Their mission is to partner families whose infants and toddlers are diagnosed with childhood cancer to take the logistical stress out of finding a cure for their child.

In her own words, Maddy’s mom, Jackie Didio, shares the story of her daughter’s brave fight.

 

In 2021, my husband, Dan, and I became pregnant with our sweet twins, Madelyn “Maddy” and Hannah.

They were born in May 2021, and like any new parents, Dan and I were filled with joy, adjusting to life with two beautiful babies. But just four months later, everything changed. We took Maddy to urgent care because she was experiencing severe constipation and tiny blue dots on her skin. The doctor recommended we head to the emergency room immediately for further testing. That night, we heard the words no parent ever expects: “Your daughter has leukemia.”

I’ll never forget the ER doctor trying to reassure us, saying, “It’s OK. It’s leukemia. Most kids have a 98 percent survival rate.” What they didn’t know—what no one knew yet—was how aggressive Maddy’s disease was and how her genetics would defy the odds.

We spent 40 days in the hospital with Maddy during her frontline treatment. My husband and I became passing ships, alternating between staying overnight at the hospital with Maddy and being home with Hannah. It was grueling. I was also nursing, determined to give Maddy as many nutrients as possible, clinging to anything that could help her fight.

But after those 40 days, we received devastating news: Maddy’s leukemia was refractory—resistant to treatment. I left my job to become the leader of our family’s medical journey, which was only possible because of my husband’s amazing health insurance and company that allowed us to travel together to find the best care possible for Maddy. I spent hours making calls to hospitals across the country—Seattle, Johns Hopkins, Cincinnati—until finally landing on CHOP (Children’s Hospital of Philadelphia). It was clear that CHOP was our best hope, offering access to CAR T-cell therapy, a revolutionary but less toxic treatment.

At CHOP, I discovered the Emily Whitehead Foundation and Emily’s incredible success story with CAR T-cell therapy. Their journey became our beacon of hope. Dan and I still vividly remember walking through CHOP’s hallways, comforted by the handprints of children on the walls and elevators. It wasn’t just hospitality, it was a place built for children where every detail reminded us that these little warriors were seen, heard, and loved. Dan spent many weeks working in DC and then making the trip back to Philly on the weekends. Some of our family came to live with us to support us during this time, and we tried our best to make every moment matter. Each moment filled with love and laughter – even through the pain.

Maddy received her first CAR T-cell infusion, and 28 days later, the initial results came back negative for leukemia. We were overjoyed with hope. But further testing revealed the heartbreaking truth: the cancer was still there. Maddy’s disease remained refractory.

And yet, the months after CAR T-cell therapy were Maddy’s best. She couldn’t tell us she felt better, but we knew. Her eyes were brighter. She giggled more. We spent our days at the swing sets before clinic visits and had little adventures all over Philadelphia. Even though she was still taking a lot of medication, she was truly happy—the happiest she had been through treatment.

Our next option was a bone marrow transplant (BMT) and radiation. By a stroke of fate, Hannah was a perfect donor match—a gift only possible because they were fraternal twins. We dared to feel hopeful again. But just one week before the transplant, everything unraveled. Maddy’s leukemia mutated into AML (acute myeloid leukemia)—a far more aggressive and difficult-to-treat form.

After a month-long stay in the PICU, a hospital switch, and a helicopter ride back to CHOP, Maddy passed away on August 13, 2022. She was only 14 months old.

Throughout her journey, Maddy’s bows became part of her identity. She loved them. Once, I forgot to put a bow in her hair before a radiation appointment, and the doctors and nurses immediately asked, “Did we lose her bow during the procedure?” It made me smile because it showed how much they cared—how they knew that tiny bow was part of who Maddy was.

After she passed, Dan and I couldn’t stop thinking about the babies we left behind—the ones whose parents were being forced to make impossible choices: caring for their sick child or working to keep their families afloat. Many parents simply can’t afford to stop working, even when their child is fighting for their life. About 15,000 children are diagnosed with cancer each year, and roughly 4,000 of them live in poverty. These families face enormous barriers—delayed diagnoses, missed treatments, and fewer options—leading to lower survival rates.

That’s why we founded the Madelyn James Pediatric Cancer Foundation: to bridge this gap. We were privileged to access cutting-edge treatments like CAR T-cell therapy. Every family deserves that same privilege, regardless of their financial status.

Our mission is clear:
 ✅ Unrestricted financial support—covering rent, transportation, car repairs, utilities, and groceries—so parents can focus solely on their child’s care.
 ✅ Access to less toxic treatments—like CAR T-cell therapy—so kids can have better quality of life with fewer side effects.
 ✅ Emotional support—we know the hospital can be sterile and overwhelming, so we provide families with familiar, comforting items, like their favorite scented candles or lotions, to bring a little piece of home into that foreign place.

Today, the Madelyn James Foundation supports six families, providing each with $45,000 in direct financial assistance, helping with rent, flights, utility bills, and emergencies. But we know this is just the beginning. We want to increase access to research and fund more trials for less toxic treatments, like the CAR T-cell therapy that gave Maddy some of her happiest days.

We stand proudly beside the Emily Whitehead Foundation, two nonprofits fighting for access and research, working tirelessly behind the scenes because that’s what these babies and children deserve. We also honor the incredible nurses, doctors, researchers, and social workers who dedicate their lives to pediatric cancer care. They are truly making a difference.

It brings me so much pride to honor Maddy’s memory through this work. I hope that by sharing her story, we can push for change, so no family has to choose between their child’s survival and making ends meet. Together, we can give every child the same chance at life that Maddy deserved.

We receive messages from patients and families around the world with experiences similar to Maddy. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find a treatment center where they can access advanced therapies.

To help us in our mission to give patients around the world the opportunity to Activate the Cure, Get Involved or Donate now.