I know I shared our experience with I Run 4 recently, but I have an update. AJ's running buddy Bridget contacts race organizers prior to events to see if she can score a second medal for AJ. When she contacted the organizer for the Flintstone Challenge, the request came back to do a feature about I Run 4 and our family specifically.
The Flintstone Challenge is a 5k run/walk sponsored by Michigan State University- Flint campus medical students that benefits the school system in Flint, Michigan. We are always more than happy to share our story because we feel it's important to create awareness for Teddy's rare disease.
We were asked a series of thoughtful questions, although it's a bit tricky to interview a 4-year-old. AJ's answers depended on his mood, so we did our best with that part.
You can check out the full interview online: http://flintstonechallenge.org/i-run-4-siblings
They also shared a copy of the event newsletter with us with a really nicely done article.
It's getting hard to live with these celebrities.
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
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