After Jeffrey was diagnosed with the deadliest type of spinal muscular atrophy, I signed up for the internet and got busy finding information and other SMA families. After Jeffrey earned his wings (5-1/2 months), I continued keeping up with other families and contacting those who were new to SMA, hoping to be as much comfort to them as other families were to me.

My husband and I were glued to a business for 2 years after Jeffrey's death. During that chaotic time, I wasn't quite as much in the loop with other families as before, but I kept spreading the word about SMA as much as I could. I then wrote a book, The Jeffrey Journey, about our brief time with Jeffrey.

It has been almost 13 years since the diagnosis, and I still choose to be involved with SMA - mostly helping spread awareness and contacting families about the special dedication in the book. 

I can't imagine not being involved with the SMA family in some way; however, there are plenty of families who despise SMA so much (and/or are so angry with God), they simply have no desire to have anything to do with SMA, either for a while or forever.

If you've lost a child to a disease or accident, do you feel compelled to continue working for the 'cause' in some way on your angel's behalf? Have you ever struggled with your decision, regardless of what it is?