Story perspectives

Sisters Battle Rare Disorder: Weight Loss and Hope

11/2/2025

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Summary

Story summary

Ciara Keown's daughters, Harper and Luna, were diagnosed with Bardet-Biedl syndrome (BBS), a rare genetic disorder that causes insatiable hunger and significant weight gain.
Harper gained 30 pounds in months, leading to bullying and her withdrawal from school.
Genetic testing confirmed BBS, which affects nearly every major organ, prompting the girls to take medications, including Imcivree.
Harper has lost 30 pounds and returned to school, but both girls continue to face health challenges, including chronic kidney disease for Luna and liver issues for Harper.

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Story summary

Ciara Keown's daughters, Harper and Luna, were diagnosed with Bardet-Biedl syndrome (BBS), a rare genetic disorder that causes insatiable hunger and significant weight gain.
Harper gained 30 pounds in months, leading to bullying and her withdrawal from school.
Genetic testing confirmed BBS, which affects nearly every major organ, prompting the girls to take medications, including Imcivree.
Harper has lost 30 pounds and returned to school, but both girls continue to face health challenges, including chronic kidney disease for Luna and liver issues for Harper.