Through Our Eyes

When Amber Bobnar's son Ivan was diagnosed with Leber's Congenital Amaurosis at just a few months old, she found herself searching for answers, resources, and most of all, connection. What she found instead was a private email listserv full of invaluable information that no one outside of it could access. So she decided to change that. In this episode, Amber shares the story behind WonderBaby.org — the resource she built that has grown into a meaningful home for parents of children with visual impairments and multiple disabilities. She opens up about the early days of Ivan's diagnosis, the unexpected challenges of advocating for a medically complex child in a place with limited resources, and the hard-won lesson she wishes she had learned sooner: that love and connection matter more than any resource she could gather. To explore WonderBaby's library of resources, articles, and community for families raising children with visual impairments, visit the website: WonderBaby.org Follow WonderBaby on Facebook: https://www.facebook.com/wonderbaby.org/  You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast