In this deeply moving episode, we sit down with Renee Staska, a mother whose life has been profoundly shaped by her three children’s battle with Neiman-Pick Type C1 – a rare and devastating form of childhood dementia. Renee shares her journey through the daily struggles of living with a terminal condition that is invisible to the outside world, yet an overwhelming reality for her family.
With raw honesty, she opens up about the emotional toll it takes and the immense strength required to navigate this difficult path. Renee sheds light on the importance of support, not just from loved ones, but from the wider community, emphasizing how vital awareness and research are for rare diseases like Neiman-Pick.
Renee’s involvement with the Little Heroes Foundation and the upcoming Run Robbie Run event also offers hope and resources for families like hers. This is more than just a fight for her children—it’s a fight for awareness, understanding, and the chance for a better tomorrow for those facing unimaginable challenges.
Tune in to hear her inspiring story, and let’s spread awareness together. ❤️ #ChildhoodDementia #NeimanPickC1 #InvisibleIllness #SupportMatters #LittleHeroesFoundation #RunRobbieRun #AwarenessAndResearch
Hosted by Kellie Finlayson & Sophie Edwards
Produced by Kellie Finlayson & Sophie Edwards
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Contact - shttalkerspod@gmail.com
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