From Russia with Love

Dear Friends…

This past week, we were able to visit with a Mitchell Syndrome family all the way from Kalmykia, Russia. Yana—a twenty-one-year-old college student—was brought to St. Louis by her parents to see neurologist Dr. Robert Bucelli with WashU Physicians at Barnes Jewish Hospital.

Yana was recently diagnosed with Mitchell Syndrome after developing ataxia and other neurological symptoms. Since then, her parents have been on a round-the-world search for answers and possible treatments. Yana’s mother and father are determined to do whatever it takes, and go wherever they must.

Just as important as possible treatments are the relational connections we are trying to forge with Mitchell Syndrome families. Receiving a diagnosis of such a rare and debilitating disease can be overwhelming. We want parents and children (and their siblings) to know they are not alone in their fight.

So despite the language barrier (our Russian is not so good), it was a joy to meet this beautiful family and to serve them in the small way we could. Vice-President Michele was able to help them navigate their doctor’s visit. And with online translation apps, our respective families were also able to meet and converse over Imo’s pizza, which our guests tolerated admirably. (The pizza, not the conversation.)

We were also able to Facetime with another young man in Texas—Michael—who himself has been battling Mitchell Syndrome for two years. (With only a handful of Mitchell Syndrome kids in the world, they should probably get to know each other.) St. Louis seems like an odd place for Texans and Russians to come together, but what is this city except the gateway to new opportunities?

Hopefully we will see Yana’s family again soon—and meet other Mitchell Syndrome families looking for hope, healing, friendship, and pizza. With your support, we can continue doing what it takes to defeat the rarest of rare diseases.

Sincerely,

Matt and Michele Herndon, and The Mitchell and Friends Board