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Rosie G - Over the Rainbow to Hope
Starting Bid : $50.00 USD
Reserve price has not been met by any bid.
Over the Rainbow to Hope
Program: HNRNHP2
Rosie’s Story:
Rosie’s story began even before she was born. Intrauterine growth restriction led to frequent doctor visits as she was much smaller than expected. Her mother, a pediatrician, sensed something wasn’t right from the moment Rosie entered the world. As an infant, Rosie struggled with feeding and had poor weight gain, raising increasing concerns about her development. Milestone markers came and went without the expected achievements, and by six months, her doctors began to suspect cerebral palsy. It wasn’t until she was around two and a half that they received a genetic diagnosis: HNRNPH2, identified through whole exome sequencing.
Rosie’s journey took a hopeful turn when her family discovered the YellowBrickRoad Project, a parent advocacy group dedicated to supporting those affected by HNRNPH2. They felt fortunate to connect with this incredible community of passionate families committed to making a difference.
Rosie brings joy to everyone she meets with her infectious smile and radiant spirit. Her love for music shines as she dances with exuberance, waving her “dance hands” and bouncing in her chair, filling the room with happiness. Although Rosie doesn’t have words to express herself, her eyes convey a world of emotions and thoughts, making it clear that she communicates in her own beautiful way.
However, more challenges arose around the age of three. Rosie developed serious seizures, experienced troubling regression in her development, and underwent multiple major surgeries to address her hip dysplasia. Yet in 2023, hope blossomed again when Rosie was selected to be the first HNRNPH2 patient to receive an antisense oligonucleotide (ASO) treatment through n-Lorem. With a mix of fear and hope, they embarked on this new chapter of her journey, believing in the potential for progress and better health. In September 2024, Rosie received her first dose, and her family hopes the treatment will help stop her seizures and foster greater communication and independence.
