We are the Maczkos: John, Catt (me), Julia (16), Jack (13) and Thomas Jersey (just turned five and has PWS by UPD).

Thomas is one of those kids who spent the first two months of life in NICUs. I know many of you are familiar with how that throws you – your perspective, your family, your schedule, your life -out of whack. Leaving the hospital without your baby… it’s just not right! Add that to the diagnosis of PWS & you’ve got a recipe for disaster if you’re not connected and know to guard your heart.