Welcome to Joey's Journey!

They say children will change your life.  Nothing has ever been more true for us.  Our lives have been forever changed after the birth of our third child Joseph.  Raising any family gives you purpose; a reason to get up in the morning and do what you need to do to take care of your family.  That responsibility is now enhanced with the daily requirements of taking care of our special son.

Never think that we are complaining or unthankful to have him in our lives.  Quite the opposite.  Having Joey has brought clarity to our lives.  We now have a mission.  Not only to amass as much knowledge about our options in steering Joey's health care needs but an equally strong desire to support research and education about this terrible affliction.

It is amazing in this day and age that so little is know about Opsoclonus Myoclonus Syndrome (OMS).  Even so, it is difficult to boil down in these few pages all that we have actually learned about OMS, N-Myc Amplified Neuroblastoma, Tumors, Cancer, Medications, Surgical procedures, Chemotherapy Protocols, treatment options, therapy, etc., etc.   And with each new experience comes the difficult responsibility of choosing the "right" path.  The decisions never stop.

Joey has spent better than 50% of his life either in a hospital bed or at some hospital or clinic getting some procedure or test.  He has been picked at and poked and sedated more than I care to recall.  And every time seems like the first.  Yet through it all he smiles.  He smiles more than we can remember our first two children did.  He gives us hope.  He inspires us to be better at everything we do.  He is our hero.