A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

More About Me

My name is Jill.

I married my husband Faron in 2002 after being together a year.  I instantly became a step-mom to two pre-teenage boys (Faron and Frank) and a dog, and soon after, a cat. 

I have a good government job and a wonderful husband who supports whatever I do.

In 2006, I became a mom to a precious baby boy, Daniel.  He will always be my first-born and my life.  Unknown to us, Daniel was fighting Niemann-Pick, Type C.  It took us 4 1/2 years to get a diagnosis, though many ups and downs.  Just as we were starting to learn how to live with a fatal rare disease diagnosis, Daniel died.

My little soldier was born on Pearl Harbor Day and died on Veteran's Day, 5 years later.

We were blessed that I could work full-time and Faron was able to stay home and be Dan's full time caregiver.

 Click here to read more about our journey.

In August 2013, we were blessed with the birth of our healthy daughter, Shelby.  She has been confirmed to be a carrier of Niemann Pick Type C, just like me and Faron.  Hopefully by the time she decides to have kids there is some treatment/cure that will be available.