Angel Buddy

It is with a most heavy heart that I share our sweet little friend Riley earned his angel wings earlier today. Riley was just two-and-a-half years young. We are so saddened by the loss of yet another precious little boy and to be honest, I have been at a complete loss trying to find the words to write this blog.


A smiley pic of handsome Riley sent to me by his momma a few weeks before his 2nd birthday.

Riley and Jacob were born just a few days apart and although the disease progressed somewhat differently in each of them, there were often times where they seemed to experience the same regressions simultaneously. Riley's mom Lori and I have been in touch for close to a year...checking in on the boys, exchanging care advice/tips, sharing birthday party plans and smiley pictures, as well as offering eachother words of encouragement during difficult times. I often look at Lori's pictures of Riley and am reminded of our Jakey boy -- such amazing little boys. Lori is amazing herself, and has done an exemplary job caring for Riley despite the circumstances. I wish I could wrap my arms around Lori and give her the biggest hug right now.

It is absolutely heartbreaking each time we lose another child to Niemann-Pick Disease. It's simply not fair and it doesn't make sense for a child to suffer like this! The thing that really doesn't make sense, is the fact that any family would have to experience this type of loss TWICE!! Lori and Chris Robbins lost their little girl Faith to Niemann-Pick several years ago, before Riley was born. As a parent who has experienced the devastating loss of my own son, I can't even fathom what it must be like to lose two precious children. It hurts my heart to the core knowing what the Robbins Family must be going through.

Thank you so much to everyone who has kept Riley and his family in your prayers. It truly means a lot to us! Please continue to keep the Robbins Family -- Lori, Chris and little Chris (Riley's older brother) -- in your thoughts and prayers. I know they will greatly appreciate the support.

Keeping Riley in my own thoughts and prayers in hopes that he is being embraced by his big sister, Jacob and his other NPD angel buddies up in Heaven. Praying also for treatments and a cure that will soon bring families HOPE!
Faith and Riley Blog