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Our Super Hero is still hanging on somehow.  He has continued to loose weight, having vomiting/gagging/dry heaves episodes.  He still has most of the same issues as the last update.  The days & nights are very long as we watch him grow weaker & weaker.  We long for the days where he was able to smile & trick us.  The days where he could actually get out of bed and go outside.  Everything hurts to think about right now.  So many memories come to our minds & they hurt as we long for more times like those.  Hearing others talk about the things their children are doing only remind us Collin will never have those opportunities.  We feel like we are in a waiting room right now.  You know how waiting rooms are, no one likes to be in them.  We people watch in waiting rooms.  The others come & go, some passing through in minutes, some hours, but we are still here in the waiting room.  We wait for whatever will happen, for our name to be called & the wait to be over.  For things to be better as our name is called or to get the bad news that no one wants to hear.  Whatever the walk we have in life, we are all eventually sitting in a waiting room, just waiting for the next part of our lives, for the changes that come when our name is called, sometimes good, sometimes bad.

We want to express our deepest thanks to everyone who helped with the dinner & sing this past weekend.  It was fantastic!  Our friends, our church & the groups who worked so hard to get it all together for us, thank you so very much!  The crowd of people who were there were amazing, so loving & so caring.  We certainly felt lots of love from you all!  They tell us it was the biggest crowd ever to be in our church, how amazing is that!  Thank you all so very much!

Wednesday, Feb 29th is Rare Disease Day  Please take the time to see how you can help spread awareness of rare diseases like the one Collin has.

Please keep sending us your Super Hero Collin stories, memories & stories of how he has inspired your life.  We have loved reading them all!  Thank you to all who have taken the time to do this!

If you go to you can see information on ordering Super Hero Collin awareness bracelets!!  We are limited, so if you want them, order soon!  You can also see Collin's life in pictures, going back over the last few years of his life.

Thank you all for checking in on us.  We really appreciate all the prayers & thoughts are we try to get through these tough minutes/hours/days.