Hailey's Story
Hailey was a beautiful little lady who always knew exactly what she wanted. Her days were joyfully full—filled with countless outfit and costume changes, dancing, playing in her playroom and on the playground, working on puzzles, shopping for dresses and stuffies, and taking blue Mustang rides for cake pops. She loved her family fiercely and delighted in arts and crafts, her virtual preschool class, and all things magical—especially unicorns. She also adored Disney (most of all Elsa, Frozen, and Minnie Mouse), dinosaurs, Daniel Tiger, Bluey, and her beloved puppy, Skye. Hailey’s curly hair was often the first thing people noticed, quickly followed by her larger-than-life personality, which earned her the perfectly fitting nickname, “Princess Sassypants.”
On April 14, 2020, we noticed Hailey was having trouble with her balance after waking from her afternoon nap. Although she could see objects, she was unable to properly track them with her eyes. That evening, we took her to UNC Children’s Hospital, where a CT scan revealed cloudiness around her brainstem, and she was admitted overnight. The following morning, an MRI confirmed the unimaginable—Hailey was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG).
Our healthy, thriving little girl had just turned three years old and was given a prognosis of 9–12 months to live. Following her diagnosis, we relocated from Cameron, NC, to Huntsville, AL, to be closer to her medical teams and the two clinical trials in which she participated. Those trials helped Hailey defy the odds, allowing her to feel well and truly live for nearly 18 months. During that time, she visited Disney World twice, enjoyed numerous beach trips across Florida thanks to Make-A-Wish and Blue Skies Ministries, went camping throughout Alabama, Georgia, and Florida, and spent precious time with her grandparents and family in Florida. Along the way, she made many friends at three incredible hospitals: St. Jude Children’s Research Hospital, St. Jude Affiliate Clinic at Huntsville, and Children’s Healthcare of Atlanta at Scottish Rite.
Throughout her cancer journey, Hailey insisted she wasn’t sick—she simply had a “boo boo” in her head that her doctors and nurses were working hard to fix. She never gave up, even while fighting the most unfair battle imaginable. While approximately 85% of children diagnosed with cancer go on to be classified as survivors, DIPG has a survival rate of less than 1%. Each year, 300–400 children in the United States are diagnosed, and 90% of them will die within two years. The standard of care has not changed since 1961, when Neil Armstrong’s daughter was diagnosed. Simply put, DIPG is the deadliest pediatric brain tumor. It is critically underfunded, and far more research is urgently needed to change the outcome for the next child diagnosed.
Over time, DIPG stole Hailey’s ability to walk, speak clearly, feed herself, play, and swallow. She remained cognitively aware as she lost these abilities, enduring more than any child ever should. Hailey passed away peacefully at home on September 24, 2021. She was just four and a half years old.
Hailey’s life, courage, and unwavering joy—even in the face of the impossible—are the heart behind Princess Hailey’s Hope Foundation. Her journey fuels our commitment to ensure that no family facing DIPG or DMG feels alone and that no child’s prognosis is limited by a lack of research or resources. In Hailey’s honor, we work urgently to fund innovative pediatric brain cancer research, support children and families through the unthinkable, and fight for a future where DIPG is no longer a terminal diagnosis. Hope can’t wait—and neither can the next child who deserves more time and more options. 💜🦄