About Eleanor
Eleanor was born on Saturday September 4, 2021 to Elliott and Alex Luckenbill in Madison Wisconsin. By all accounts she was born happy, healthy beautiful baby girl. After 3 amazing weeks together as a family at home a fever brought Eleanor into the ER on Saturday the 25th. By the time we were admitted into the hospital that afternoon, her belly began to distend inexplicably. After 3 days and an exploratory surgery to find the source of the bloat on Tuesday, September 28th Eleanor was diagnosed with Malignant Rhabdoid Tumors. MRTs are a rare form of pediatric cancer with only around 20-25 cases a year. There are two genetic markers linked to this type of tumor and in Eleanors case the one she had, made up only 2% cases. After her surgery and diagnosis we began to see some improvements in her breathing and strength, but her belly continued to fill with fluid from her tumors. Specialist both in Madison and across the country put their heads together on the best course of treatment for our sweet Eleanor, but on Wednesday October 6th ultimately decided treatment was not the right course of action. Treatment for this type of tumor is aggressive and often too toxic for the children who receive it. After 3 more days on October 9th we said goodbye to our beautiful baby girl who passed away peacefully in our arms. We spent those weeks in the hospital being as normal as possible. We read to her, played music, snuggled on the couch as a family, danced around the room and tried to make memories during the precious time we had left.
No family should have to go through this with their child. There should be more, less toxic options for children as they go through treatment. Less than 4% of federal funding is unaccepable for these kiddos. Alex's Lemonade stand works to make the outcome and treatments better and safer for their tiny bodies. Please consider donating in honor of Eleanor and all the children and families going through a similar diagnosis.