A Day In The Life of a Wolfram Syndrome Mom

Honestly, until last year, I have felt very blessed to be a dedicated wife and mother of four unbelievable children.

My brother, J.T. Snow, and I started a foundation in order to help raise money and awareness for a disease that few people knew about.  Without the Snow Foundation raising money for Washington University School of Medicine, a cure for Wolfram syndrome was going to disappear and there would be no “hope” for my daughter Raquel to live a normal life, a life that she so deserves!

Raquel was diagnosed with Type 1 Diabetes in late 2010 and up to this point all she has had to handle was insulin shots and keeping her blood sugars stable, a few accidents of bed wetting, but other than that, everything was manageable.  I have observed other Wolfram patients at the clinics the last 4 years and I always felt blessed because she could see, hear and control her bladder relatively well compared to the other patients.  Well, things have taken a turn for the worst the last year and I haven’t really wanted to write about it because I have been a bit in denial, I always told myself “this will not happen to my child, she will have “slow” progressing Wolfram.”  Unfortunately, this is not the case, not the case at all.

My journey this past year has been an interesting one, life altering, really life altering, and I hope to share some of my trials and tribulations that I have encountered since the diagnosis of my child. The experiences I have encountered as a wife, a mom and a president and co-founder of a Foundation, have been overwhelming on so many different levels, it has been an interesting ride so far. Lets just say, now I need to put on my seat belt, it is going to be a bumpy ride!