The story behind the Kylie Jane Long Foundation

Our first child, Kylie, was born on May 3rd, 2004. With her birth, our lives were forever changed. She brought hope to our families, who were experiencing health crisises, and she gave everyone reason to overcome their struggles. As any new parents, we loved watching our daughter grow and change each and every day. As Christmas was approaching, Kylie was nearly 8 months old, and her personality was starting to shine. However, we had no idea what was looming on the horizon.

In January 2005, Kylie started having low-grade fevers, which her doctors described as viruses. A few weeks later, she was back at the doctor with slight breathing issues. We were told to take her to the emergency room where we learned she had a minor case of pneumonia. We were given antibiotics, but Kylie kept getting worse with each passing day.

The next few weeks were a flurry of doctor and hospital visits, each without any answers. Finally on January 21st, we got answers, although they were not what we wanted to hear.

That night we learned Kylie had a rare and aggressive form of childhood liver cancer.

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The next four months Kylie fought for her life, enduring multiple surgeries, 4 rounds of chemotherapy, and countless other treatments while in the intensive care unit at Rainbow Babies and Children's Hospital in Cleveland. Amazingly, her spirits remained high and she flashed smiles to everyone who entered her hospital room.

As Kylie's 1st birthday approached, it became clear the cancer wasn't letting up and that there were no other treatment options available to save Kylie's life. On May 6th, 2005, just 3 days after her birthday, Kylie received her angel wings.

The Kylie Jane Long Foundation was formed in memory of Kylie to enhance the lives of pediatric patients and their families who are facing a critical or chronic illness. Incorporated as a non-profit 501 (c)(3) organization, The Kylie Jane Long Foundation is run by volunteers dedicated to its mission: To enhance the lives of local pediatric patients and their families by providing assistance, improving physical spaces, educating parents and medical staffs, and raising awareness of rare pediatric cancers.

Although Kylie's life was short, we will feel her strength, courage, and love all the days of our lives. Through the far reaches of her love, Kylie's spirit remains with us.

KJLF on Youtube - News Story

KJLF on Youtube - Kylie Video

[Kylie's carepage link -, page name = KylieJaneLong]