Last year when Nora was approaching her 1-year seizure free anniversary, I called our local newspaper because I thought they might be interested in her story. They love a good human interest story and I wanted to spread the word about the keto diet as a treatment option for childhood epilepsy. They wrote a great article that surprised us by being put on the front page of the Sunday paper! (Here’s the post on last year’s story).
This year, approaching Nora’s 2-year seizure-free anniversary, I contacted them again because sometimes they do small “updates” on stories that they have been following. Instead of a small update, they asked if they could send a reporter and photographer to Nora’s doctor’s appointment and this time they told us that it would appear on Sunday’s front page.
But the real news is what else happened in that year–not to Nora, but to another child from a nearby town. Because we told Nora’s story and the newspaper decided it was big news, the Swick family got the resources that they needed, the right diagnosis and started the diet one week later. The story doesn’t say it explicitly, but Jaron has Doose syndrome and the diet is the best treatment. How they made the journey to the diet is in the article, and now Jaron is big news too–and seizure free!
I’m so relieved for Jaron and his family. We’ve been blogging to reach out to others who need support because we’ve received so much comfort and ideas from other families who have taken this path. May we all pass it forward so that all kids get the right treatment when they need it.
We want to thank Doernbecher Children’s Hospital and Dr. Wray for opening their offices to tell Nora’s story. Dr. Wray joined the practice just when Nora needed him, during her own “crisis mode” moment. We would not be here without his expertise and smile. Going to the doctor is a treat when we get a smile and giggle every time. They are running a top-notch program. We look forward to working with the ketogenic diet program to set up a formal support group this summer, so stay tuned for developments.