After her 1-year-old son, Ivan, was diagnosed with a rare retinal disorder in 2006, Amber Bobnar began searching online for medical data and support. In an effort to compile the information in one place, she launched WonderBaby.org.
"My husband and I were living in Kona, Hawaii, which was beautiful, but there wasn't a lot in terms of medical and supportive care," said Bobnar, whose family moved to Watertown in 2007 so Ivan could attend Perkins School for the Blind and gain greater access to early intervention and medical services.
"I had the skills to create a website, so I thought why not put everything I found online so others can benefit from it," she added. "It took off immediately because there was a need, and no one was filling it."
While Bobnar initially intended the site to be composed of links to various resources, she soon began writing articles about teaching and playing with a blind child, favorite accessible toys and where to find them, medical advancements, grant opportunities, and ways to connect with families facing similar experiences.
In 2011, Perkins purchased WonderBaby.org and hired Bobnar part-time to continue overseeing the site, while adding features for parents of children with visual impairments and multiple disabilities.
Also that year, Bobnar became president of the Massachusetts Association for Parents of the Visually Impaired. In 2012, she helped launch the accessible "beeping" egg hunt, which now takes place every spring at Perkins. For these efforts and more, she was presented this past April with the Marilyn Micco Parent Recognition Award by the Watertown Special Education Parent Advisory Council.
Bobnar said it was an honor to be recognized by the special needs community and have the opportunity to establish greater ties with local groups and advocates. She continues her work on WonderBaby.org, balancing serious information with positive messages, games, contests, and lots of giveaways.
Most of all, she wants it to convey hope.
"It might feel like the end of the world when you get that diagnosis, but it's not," she said. "There are lots of people out there, just like you. We help you find them."
For more information, visit wonderbaby.org.
Cindy Cantrell may be reached at firstname.lastname@example.org.