Katie Lanza is a true fighter—and not just because of her 2020 appearance on “American Ninja Warrior.” She rightfully earned this badge after surviving the frightening, emotional journey of watching her newborn son, Nolan, rapidly deteriorate and then rise again, thanks to a blood stem cell transplant.
This month, she and her son—aptly nicknamed Nolan the Champ—are participating in Champion Challenge, Be The Match’s annual community fundraiser running now through June 30. She’s raising funds to secure grants for other patients and families to help them overcome financial barriers before, during and after a blood stem cell transplant.
A harrowing start
After weeks of waiting, Katie and her husband were so excited to finally bring their son Nolan—who was born prematurely—home from the NICU. But their bliss was short-lived: soon after the homecoming, little Nolan began to struggle. He cried a lot, wouldn’t eat and was lethargic at times. “Deep down I felt something was wrong,” Katie says.
After a series of fevers brought them to the emergency department, only to get shrugged off as a virus, Nolan’s pediatrician sent them to a children’s hospital a few hours away. As Nolan’s health continued to rapidly decline, the doctors ruled out other viruses and cancers and eventually found his diagnosis. He had primary hemophagocytic lymphohistiocytosis (HLH), a rare and devastating inflammatory disorder that is fatal without prompt treatment.
From one mother to another
Nolan’s health began to improve greatly with chemotherapy and steroid treatment, but he needed a blood stem cell transplant for his best shot at long-term survival. No matching adult donor could be found within the family or on the registry. However, they were fortunate enough to receive life-saving stem cells from donated umbilical cord blood—thanks to a selfless mother from across the world.
In May 2018 Nolan received his transplant. These days Nolan is doing great, spending his days doing what five-year-olds do best: playing, riding bikes, rock climbing and doing parkour. “We are forever grateful,” says Katie. “I am forever changed by it, but it’s also what motivates me.”
Raising funds so others can win the fight
While Katie has already done a few fundraisers for Be The Match, she wanted to do something special in honor of Nolan’s fifth transplant anniversary last month. She decided to mark the milestone by participating in Be The Match’s Champion Challenge—the annual community fundraiser to help remove financial barriers to transplant for patients and their families.
To help reach her fundraising goal she has decided to sell t-shirts, designed by one particularly special artist: her son. “I wanted to find a way for Nolan to be involved in the fundraiser,” says Katie. “Nolan loves to draw so I thought it would be cool for him to use his passion to pay it forward.”
Katie says she is grateful for all the support she received from Be The Match during the transplant journey. She is also struck by the kindness and generosity of their community—and even strangers—during those difficult, long months before, during and after transplant—be it food gift cards, financial donations or laundry services.
“I love that Be The Match provides financial assistance to families when they need it,” she says. “I hope our fundraiser will help relieve some of the financial stress so they can completely focus on supporting their loved one.”
Want to help patients and families in desperate need of financial assistance during transplant? Join our Champion Challenge by June 30! Don't worry, you can continue to raise funds past this date.
You can also celebrate Nolan’s transplant anniversary by picking up one of their custom-designed shirts; all proceeds go straight to their Be The Match fundraiser to help patients.
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