Episode 10 - Finding a Way with Rett Syndrome: A Conversation with Sarah
Sarah joins us to share life with her daughter, Aleah, who has Rett syndrome. We talk about the journey of Aleah’s diagnosis, appealing Medicaid denials, and making room for camp, costumes, and everyday joy. We also discuss caring for a child while facing her own cancer diagnosis, learning to accept help, and finding a community that shows up.
EPISODE SUMMARY
Aleah loves a bus ride, a fun costume, and being around people. At nine, she has plenty of opinions and a side eye that says more than words sometimes can. In Episode 10, Sarah introduces us to her daughter and shares the long search for a diagnosis. After repeated genetic testing and an insurance denial, hospital funding helped the family finally get answers. Sarah reflects on recognizing that something was different, accessing early intervention, and finding a care team willing to listen.
The conversation moves into the work that happens behind the scenes. Sarah talks about appealing Medicaid waiver denials, reductions in home health aide support, and the emotional toll of repeatedly explaining everything her daughter needs. She points to Indiana Family to Family as a resource for navigating denials and explains how her own experience has helped her to support others.
Sarah also shares what it means to manage much of Aleah’s care on her own, and what changed when she faced cancer treatment herself. Her sister, older children, and community stepped in with practical help. Learning to accept it was not easy. We talk about asking for a break, finding small moments for yourself, and the relief of being around people who understand without needing every detail explained.
There is plenty of room for creativity and laughter, too. Sarah tells us about wheelchair costumes from May We Help, how a high school robotics team helped adapt a stroller for their family beach trip, and finding opportunities for Aleah through other families. We all reflect on our local adventures: adaptive water skiing and Rett U Camp at The Center for Courageous Kids.
Sarah’s message is simple: a diagnosis does not change who your child is. Meet them where they are, and keep making room for the life they enjoy.
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