Haley Haus

Haley is a joyful 5-year-old who loves wearing princess dresses, doing crafts, and being with her family. At 2-years-old she was diagnosed with SLC6A1-related neurodevelopmental disorder, a rare genetic condition that causes epilepsy, developmental delays, autism, and other neurological challenges. There is currently no cure, but researchers are working on one—and in the meantime, Haley’s family is doing everything they can to give her the best possible quality of life.

Haley has a contagious smile and a beautiful spirit. Though she struggles with speech and social interaction, she works hard in speech therapy and is slowly learning new ways to express herself. Sadly, with SLC6A1, regressions are common, so her family never knows if a hard-won skill will stick. Still, they celebrate every small breakthrough and continue encouraging Haley every step of the way.

Because of her condition, Haley faces daily struggles. She experiences seizures that disrupt her focus and development. She requires constant supervision and specialized care. Tasks many take for granted—like safely walking, eating, or expressing needs—require ongoing therapy and support. Her family is determined to give her every opportunity to grow, learn, and enjoy life, but the costs of care add up quickly.

Haley’s family is fundraising for medical needs not covered by insurance, including physical, occupational therapy copays, medication copays, travel expenses to specialists, and eventually, participation in clinical trials that could offer life-changing treatment. Her out-of-pocket medical expenses total over a thousand dollars each month. Her parents are navigating this financial burden while raising two young children.

With your support, Haley’s family can continue vital therapies, pursue groundbreaking treatment options, and create a safe and enriching environment where Haley can thrive. Every donation brings hope—not just for Haley’s future, but for the entire SLC6A1 community working toward a cure.

Please consider donating to Help Hope Live in Haley’s honor today, and help spread the word to others who might support her journey. If you’d like to organize a fundraiser or get involved in another way, please contact her Nannah (grandma) at [email protected]. Thank you for standing with Haley and giving her a brighter tomorrow!

Family and friends of Haley Haus are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with a Catastrophic Illness. Haley has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses.