Entries by Stephanie Snow Gebel

It’s the Little Things

We went to Children’s Hospital today and Raquel was more excited this time than previous visits. She was getting her Omni Pod (Insulin Pump). Her blood sugars have been all over the place, which is not a good thing. When her sugars are high or low they can affect her vision, moods and appetite. Did […]

We Can Be Like The Big Foundations

Since my nephew’s diagnosis of Neuromyelitis Optica (NMO) I was curious if there were any foundations representing NMO, after all, this is a rare disease just like Wolfram syndrome. My sister sent me a link to a foundation called Guthy-Jackson Foundation. When I read about this foundation, I was a little envious of what they […]

Prayers For My Nephew Jake

I am writing this from an airplane on my way home from Southern California after visiting my nephew, Jake, who has been lying motionless in a hospital bed for the last 16 days. Jake is an unbelievable 17-year old, great baseball player, as well as a type 1 diabetic. He has had diabetes since he […]

Don’t Ask Why

Last Friday, I had an unbelievable discussion with the owner of a company that has offered their help to The Snow Foundation to expand our wings. At the end of the meeting, I remember walking out of his office completely perplexed.  I felt like I had just had a discussion with God, my mom, my […]

A Mom on a Mission

Today I was riding my exercise bike and reading “The Cure” which is about a desperate father, John Crowley, who loved his children and had committed his life to finding a cure for Pompe Disease. I read an excerpt towards the end of the book where John, an Ivy League graduate, had been able to […]

You’ve Got To Have Hope

Last Saturday was my 7-year old son Jack’s first football game. The whole family went, including my brother J.T.’s 16-yr old son Shane who was visiting from San Francisco. We were all excited to go and watch these miniature NFL athletes. Raquel said to me, “mom why do I have to go, I can’t even […]

The article I read over and over

I have read many articles related to Wolfram syndrome. The most-read article is entitled “Neurodegeneration and diabetes: UK nationwide study of Wolfram (DIDMOAD) syndrome” describing the natural history of Wolfram syndrome. This article was written by Timothy Barrett, MB, BS (MD), PhD in 1995.http://www.ncbi.nlm.nih.gov/pubmed/7490992 I read this paper over and over when I started working on Wolfram syndrome […]