Poppy’s Promise: A Call for Hope and Action

Our beautiful daughter, Poppy, was born in 2014. From an early age, we noticed she wasn’t progressing like her siblings. Despite her vibrant spirit and determination, she faced delays in development. Poppy began to fall without reason by the age of two, and our concerns were often dismissed by doctors. Even a midwife reassured us that she was just being lazy and would catch up.

Poppy remained vibrant and happy , making close friendships at school and showing gradual progress in her speech. Yet, as we sought answers, we were repeatedly told she had a global developmental delay and would eventually catch up. But as time passed, Poppy continued to struggle.

In 2018, after persistent advocacy for her health, Poppy was diagnosed with autism and a mild to moderate learning disability. However, her challenges only escalated. She began to experience sudden regressions, losing skills and becoming increasingly reliant on others for daily living. By 2024, after countless attempts to find answers, Poppy was finally diagnosed with SLC6A1, a rare genetic disorder resembling dementia. This diagnosis came too late; Poppy had lost her ability to feed herself, communicate, and was confined to a wheelchair, often distressed and confused. No longer living , merely existing.

Despite this heart-wrenching regression, there is hope. In September 2025, eight-year-old Maxwell Freed became the first recipient of a groundbreaking gene therapy for SLC6A1, developed through SLC6A1 Connect and Nationwide Children’s Hospital. This treatment aims to deliver a functional gene to the brain and has shown early promise in improving motor skills and coordination.

We are passionate about changing the narrative for Poppy and children like her.

We urgently need your help. Your support can give Poppy a chance to thrive again and reclaim her voice. Together, we can make a difference.

Please consider donating to our GoFundMe campaign and help us bring hope back into Poppy’s life.