Alivia’s Harvest of Hope is a community dedicated to supporting Alivia (“Livi”), an 11-year-old girl living with Pitt Hopkins Syndrome (PTHS), a rare neurodevelopmental disorder affecting only about 1,564 people worldwide. Livi’s life is full of challenges that most children never face: motor difficulties, medical complications, seizures, and the daily struggle to communicate what hurts. While she can use her words, expressing her needs and emotions is often difficult, as well as daily takes, making her reliance on caregivers constant.

Our journey began when Livi was just a baby. After months of unanswered questions and countless medical appointments, she was diagnosed with PTHS, a condition so rare that even her doctors had to research it online. Faced with the reality of what her diagnosis meant, we committed ourselves to becoming her voice and advocate, determined to fight for her and for the countless families facing similar challenges.

Through the Pitt Hopkins Research Foundation (PHRF), donations from our community fuel cutting-edge research, including gene therapy, protein replacement therapy, and clinical trials like microbiota transfer therapy, which are already improving lives. Over 94 percent of donations go directly to research and support, bringing hope and real treatments closer to children like Livi.

Alivia’s Harvest of Hope is more than an organization; it is a movement. By raising awareness, hosting events, and rallying support, we are building an army of advocates who refuse to give up. Together, we are turning compassion into action and hope into healing, making a tangible difference for Livi and families worldwide.

Meet Livi
Livi is joyful, determined, and endlessly inspiring. Family and friends describe her as loving, playful, smart, and full of heart. She lights up every room with her smile, laughter, and spirit. Despite her daily challenges, she teaches everyone around her about resilience, bravery, and never giving up.