In this deeply moving episode of Rising Up Rare, host Ali Lad sits down with fellow NPS1 mom and warrior, Brooke Biddle, to explore the emotional and medical journey of raising her daughter Finley through a rare disease diagnosis, bone marrow transplant, and beyond. From gut instincts that led to a life-saving diagnosis to the complex decisions every rare mom must make alone, Brooke’s story is one of raw strength, fierce advocacy, and hope in the face of impossible odds. Whether you're a newl...
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In this deeply moving episode of Rising Up Rare, host Ali Lad sits down with fellow NPS1 mom and warrior, Brooke Biddle, to explore the emotional and medical journey of raising her daughter Finley through a rare disease diagnosis, bone marrow transplant, and beyond. From gut instincts that led to a life-saving diagnosis to the complex decisions every rare mom must make alone, Brooke’s story is one of raw strength, fierce advocacy, and hope in the face of impossible odds. Whether you're a newl...
Meet Mandy and Charlie - Hope For Charlie #CureMPS1Project
Rising Up Rare
1 hour 5 minutes
1 year ago
Meet Mandy and Charlie - Hope For Charlie #CureMPS1Project
Charlie.CureMPS1.org Meet Charlie and Mandy Charlie is a bright, resilient 5-year-old who, since birth, has braved countless medical procedures and challenges associated with MPS1, also known as Hurler Syndrome. Diagnosed just days after birth, thanks to Tennessee newborn screening, Charlie has undergone two bone marrow transplants, many rounds of chemo, hours of enzyme replacement therapy, and numerous hospital stays. She will face numerous orthopedic and other surgeries as she gets older a...
Rising Up Rare
In this deeply moving episode of Rising Up Rare, host Ali Lad sits down with fellow NPS1 mom and warrior, Brooke Biddle, to explore the emotional and medical journey of raising her daughter Finley through a rare disease diagnosis, bone marrow transplant, and beyond. From gut instincts that led to a life-saving diagnosis to the complex decisions every rare mom must make alone, Brooke’s story is one of raw strength, fierce advocacy, and hope in the face of impossible odds. Whether you're a newl...
