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.
Friday, February 25, 2022
Is Anyone Getting Married?
Tuesday, February 22, 2022
Loving Life
You can feel the joy, can't you? |
Wednesday, February 9, 2022
He's Got a Knife!
Friday, February 4, 2022
This Child Loves Cheese
I'm not quite sure what Teddy's favorite food is, but I can guarantee that carbs and cheese are both high on his list. He will snag either off the counter and run off like a bandit to enjoy his stolen goods (including entire loaves of sourdough or pounds of cheese). He was quite excited when we stopped to get fresh, deep-fried cheese curds at the cheese factory along the way to the farm last weekend.
Gosh, he looks grown up here. |