This weekend we're heading to Michigan for a long weekend, pulling the boys from school Friday and Monday. A year ago, AJ's running buddy ran the Detroit marathon, which prompted his buddy, Teddy's buddy and I to decide we should do the marathon together as a relay. Fast forward to this year, and we managed to organize a relay team.
So we're heading to Michigan, with a stop Friday at Indiana Dunes National Seashore to explore, stretch our legs and get Junior Ranger badges. Then we'll head the rest of the way Saturday to meet our team for packet pickup. AJ's running buddy, Ms. Bridget, is going to run the first leg. I'm taking the second leg, followed by Teddy's running buddy's husband Steve. Teddy's buddy Heather will finish our marathon team.
AJ's super excited to meet his running buddy for the first time, and I'm excited for the whole weekend. We'll get to spend time with both buddies, outside of the race, and have some fun time together as a family after a week of work travel for Dave. It's a weekend spent with people who enrich our lives and are two of the biggest supporters of our children.
The only downside is that my running buddy, who lives in the area, is out of town. Guess we'll have to try again next year, right?
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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