Diagnosed at 18 months, Eloise lives with cystinosis. Her parents, Jenni and Tom, share the emotional journey from diagnosis to daily management, including the challenges of foul-tasting medication, disrupted sleep, and the importance of early, open conversations about the condition. Eloise’s older sister Clara, a registered young carer, plays a vital role in supporting her sibling’s care while navigating her own experience. Despite the hurdles, Eloise is a vibrant 7-year-old who loves gymnastics, singing, and school trips—proof that with support and consistency, children with cystinosis can lead joyful, active lives.
This story underscores the urgent need for improved treatments and better support for families at diagnosis. It’s a call to action for the cystinosis community to keep pushing for change, while celebrating the resilience of children like Eloise.
Read the full story on Kidney Care UK.
