Earlier today, Alex and I received the news that Will's donor is no longer willing to donate marrow and has removed himself from the registry.
Who does that? Who agrees to donated to a BABY. Agrees to save a BABY'S LIFE. Agrees to a time frame. And then just backs out when it's finally time.
I am angry.
I have always been a big advocate for letting people know how huge of a decision it is to join the registry. It is not something to take lightly. It is not something you do because you hear about a sick baby. It is a LIFE LONG COMMITMENT.
I have said this many, many times and I am going to say it again:
IF YOU ARE NOT WILLING TO PUT YOUR LIFE ON HOLD. IF YOU ARE NOT WILLING TO GIVE YOUR ALL TO THE DONATION PROCESS. DO NOT JOIN THE REGISTRY.
IF YOU ARE ON THE REGISTRY AND YOUR LIFE SITUATION HAS CHANGED AND YOU ARE NO LONGER WILLING/ ABLE TO DONATE, CALL RIGHT NOW AND HAVE YOURSELF REMOVED FROM THE DONOR LIST.
I do not wish the hurt and pain our family is feeling right now on my worst enemy. I pray that one day families will not have to experience this type of devastation. Unfortunately, it happens all too often.
I am trying (and failing miserably) to stay positive. We've had a wonderful year and I know that my anxiety was less than it could have been because we had a donor secured. I will always be thankful for that. I was able to worry less and live more. Soak up our life and our time together.
But I am devastated. I am literally sobbing my way through this post.
Please keep Will and our family in your thoughts and prayers.
Please pray for his new donor, whom ever that may be.
Pray that we have an easy time finding Will's second donor.
Pray that their heart is fully committed to donating.
Most importantly, pray that we find them in time.