Maddy Ray: An Inspiration for Those Fighting Hepatoblastoma

When 1-year-old Maddy Ray fusses loudly for her breakfast, keeps her big sister up at night with giggling fits or makes a mess emptying cabinets in the living room, her parents, Katie and Luke, don’t mind one bit. Just months earlier, Maddy Ray lacked the appetite and energy to do any of that.

The baby had a rare cancerous liver tumor called hepatoblastoma, and after three rounds of chemotherapy, her liver started to fail. Doctors near their home in Wisconsin told Katie and Luke a grueling liver transplant was the best bet for her long-term survival. Katie could be the donor, the family had been thankful to find out, but it would be a taxing, and life-threatening, experience for mom and baby.

“A liver transplant was, we thought, the only alternative option,” Katie said.

‘He’s the guy’

The family remained optimistic that there could be another way to help Maddy Ray. Katie’s relative, a medical researcher, had heard of a surgeon at Ann & Robert H. Lurie Children’s Hospital of Chicago, Dr. Riccardo Superina, who was renowned worldwide for pediatric liver surgery and transplant.

After hearing about Dr. Superina, the couple decided to get a second opinion in Chicago, heading to Lurie Children’s as soon as Maddy Ray’s test results were sent there for review.

Dr. Superina took the case and had good news for the family after studying the little girl’s scans: he was confident he could cut out the tumor, helping the family avoid transplant.

“As soon as we met Dr. Superina, Luke and I looked at each other and knew: he’s the guy,” Katie said.

Finding Compassion and Hope at Lurie Children’s

But another giant hurdle awaited the family: insurance. The family’s provider didn’t want to cover care provided by Dr. Superina.

“When your child has a rare condition, you get one shot. It’s not a time for attempts of guessing,” Katie said. “I had to be able to put our daughter in the arms of someone who would give her the best chance possible. If Dr. Superina can’t do it, no one would be able to.”

Katie said she and Luke were prepared to sell their home and take on debt to get care in Chicago. But, due in part to unique insurance issues, Lurie Children’s staff was able to step in and help arrange for Maddy Ray to get care with no financial obligation, giving her the best chance of avoiding a transplant. As a nonprofit hospital, Lurie Children’s aims to never turn away a child because of ability to pay. In fact, the hospital spends over $100 million a year in uncompensated care costs, which is made possible by generous donor support.

“It meant everything to us,” Katie said. “You can’t put that into words.”

On October 1, 2018, Dr. Superina performed Maddy Ray’s eight-hour surgery, removing the tumor and about 80 percent of her liver, one of the body’s only organs that can regenerate.

Eight days later, the family left the hospital with a “healthy, smiling baby who was capable of sitting up,” Katie recalls.

Happy at Home

In January, Maddy Ray celebrated her first birthday with a big brunch with her extended family.

The family continues to get clean blood draws, indicating Maddy Ray is cancer-free, and the appointments are getting scheduled further and further apart as the baby progresses.

Katie said she and Luke take great delight in watching Maddy Ray meet milestones that were put on pause because of the chemotherapy she endured. These days, she pulls herself up to stand, crawls upstairs at her home, wrestles her big sister, Emma, and devours scrambled eggs and bananas because she can finally eat on her own and without pain.

“She hasn’t missed a beat since we’ve been home,” said Katie. “Luke and I have no idea how we can ever repay all this kindness and gratitude forward

Watch the 'All for Maddy' Story