In the realm of rare genetic diseases, caregivers often find themselves wearing numerous hats – from being parents and transforming into caregivers performing tasks nurses, or other medical professionals perform, working multiple jobs, forego their own care due to lack of time or resources needed. The journey can be incredibly demanding, emotionally charged, and physically exhausting. Parents and grandparents alike become the primary pillars of support, channeling their love into not only providing a home but also assuming the role of dedicated nurses in the face…