Episode 10 - Finding a Way with Rett Syndrome: A Conversation with Sarah
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Episode 10 - Finding a Way with Rett Syndrome: A Conversation with Sarah
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In Episode 10, we talk with Sarah about her life with 9-year-old Aleah, who lives with Rett syndrome. We discuss the long search for a diagnosis, early intervention, choosing a care team that listens, and Sarah’s experience appealing Medicaid waiver denials. She reflects on the work that can be overlooked when caregiving becomes your everyday routine, and why asking for support can feel so difficult.
Sarah also opens up about navigating much of Aleah’s care on her own, and accepting help during her own cancer treatment. Alongside those challenges are triumphs like wheelchair adapted costumes from May We Help, a custom stroller solution with help from a robotics team, adapted water skiing, and the immense sense of belonging at Rett U camp at The Center for Courageous Kids. Aleah’s humor, personality, and love of being around people stay at the heart of the conversation.
This episode is a reminder to see the person beyond the paperwork, make room for joy, and build a community that shows up. Sarah’s first lesson for listeners: whatever the diagnosis, your child is still your child. Meet them where they are. You will find a way.
#TheRareRemix #RettSyndrome #CaregiverSupport #DisabilityInclusion