Rare is Rad!

If you don't love someone with a rare disease, you probably have never heard the phrase show your stripes. The idea is that we look for the most common explanation, so we think horses when we hear hooves. The rare explanation of a zebra is also entirely possible.

The journey to Teddy's diagnosis was filled with looking for horses and never finding them. We looked at febrile seizures. But he didn't fit the criteria. We looked at all the common genes for epilepsy. But that didn't give us answers. Every test for 1.5 years was negative or normal, yet the seizures continued and the delays grew more noticeable.

When we got his diagnosis of MCAHSS1, we felt so alone as we were told he was possibly the 15th in the world. Within a month, we were welcomed into a small but incredible community.

Through the years, the name of his disorder has changed to PIGN-CDG, and our community has grown. He's been published in a research paper. We've made friends around the world, most of whom we've never met in person.

A diagnosis didn't change the prognosis or treatment for Teddy, but it helped us find out herd of zebras. And I'm the past year our herd partnered with brilliant scientific minds and expert CDG doctors to work together to find a treatment for CDG-PIGN. If you want to support our fundraising efforts, you can donate here: https://secure.givelively.org/.../finding.../kerry-blondheim

Today is Rare Disease Day. We're not alone in our rare journey. Thanks for being a part of our herd. And thanks to Jillian Halstrom Saddlemire for the

rad

shirts!

Rare is rad! We celebrate Teddy's uniqueness!

In honor of Rare Disease Day, AJ presented to his class about Teddy's disorder. He developed his presentation himself, although he invited me to join him. During the course of 30 minutes, AJ educated his classmates on CDGs, Teddy specifically and our research project. He did a great job and is such a great advocate for Teddy!

AJ is so confident and capable in sharing about Teddy's disorder.