Young Boy’s Cancer Journey Sparks LEGO Fundraising Success

Eight weeks after being hospitalized for a severe form of cancer, Henry Neligon, an eight-year-old from Madison, Connecticut, has not only survived but also inspired a community to help other children battling similar illnesses. His parents revealed that during his treatment, Henry expressed a desire to support fellow young cancer patients, leading to a remarkable fundraising initiative.

Henry’s journey began on November 20, 2024, when he was admitted to Yale New Haven Children’s Hospital with symptoms resembling a stomach flu. Blood tests and a bone marrow biopsy confirmed he had Juvenile Myelomonocytic Leukemia (JMML), a rare form of leukemia that occurs in roughly 1 to 2 cases per million children, according to the National Cancer Institute. Just ten days later, his condition deteriorated drastically, resulting in a stroke that left him unconscious and reliant on life support.

His mother, Jessica Neligon, recounted the traumatic experience: “He was completely unresponsive for days in the PICU.” Despite the severity of his condition, Henry began to recover, with LEGO sets playing a crucial role in his rehabilitation. “He got his dexterity back because of LEGOs,” Jessica noted, emphasizing how these colorful blocks motivated him during his recovery.

In January, Henry was transferred to the Children’s Hospital of Philadelphia for a stem cell transplant, necessary due to the high relapse rate associated with JMML. Fortunately, he responded well to chemotherapy and achieved remission, although the transplant remained his best option for a lasting cure.

While undergoing treatment, Henry took to his mother’s Instagram account, @thelegohenry, to announce a bake sale aimed at raising funds for other children with cancer. On February 10, 2024, he encouraged his school community: “If you want to make kids happy, you should do this.” The bake sale was a resounding success, generating $24,000 in total, including an $8,000 private donation.

The funds were divided, with $2,000 donated to the Toy Closet Program, founded by Ann Nyberg, a WTNH News 8 anchor, and the remaining $22,000 allocated to a new initiative called the Bedside Builders program at Yale New Haven Children’s Hospital. This program aims to engage young patients in creative LEGO building, providing them with a sense of normalcy during their hospital stays.

Toni Crowell-Petrungaro, the Child Life program director, explained that this program was designed to help kids maintain their developmental skills while undergoing treatment. “We’re trying to help build up their skills while they’re going through the treatment,” she noted. The Bedside Builders program allows children to create freely, fostering creativity and providing comfort during a challenging time.

Henry expressed his joy over the success of the LEGO program, stating, “I’m super happy we funded the LEGO program that Yale got off the ground.” His initiative not only brought happiness to him and his peers but also served as a reminder of the supportive community surrounding them.

Former Jeffrey School principal Becky Frost reflected on the community’s involvement, stating, “It was literally Henry’s idea, and it was the support of the community that rallied to make it happen.” The family received an outpouring of love and support, with cards and gifts flooding in from classmates and neighbors.

As the Neligon family navigated this challenging journey, they emphasized the importance of being present for Henry during his hospitalizations. Jessica shared, “You summon every ounce of your being to be there for your child.”

Despite the harrowing experience, Henry’s recovery has been remarkable. His father, Chris Neligon, expressed disbelief at how far they have come: “Literally, on December 9 last year, I didn’t think we were going to be here.” Now, with Henry home and cancer-free, the family is hopeful for the future.

With the success of the Bedside Builders program, the Neligons hope to see similar initiatives implemented in more hospitals. Jessica concluded, “We’re so proud of him. It was his brainchild.” As Henry continues to recover, his story serves as an inspiring testament to resilience and community support in the face of adversity.