Our son Jordan was born positively beautiful and seemingly healthy on June 12, 2001.  Just weeks after his birth, we noticed some swelling on the side of his neck and took him to the ER in Wilmington to be checked out.  That day, July 5, 2001, took us to a place we never thought we'd be.

 

While the swelling turned out to be a hemangioma, a vascular tumor which can appear in the first month after birth, other tests showed that Jordan was suffering from a rare, life-threatening condition which is sometimes associated with that particular form of tumor.  Kassabach-merritt syndrome occurs when the hemangioma destroys the blood platelets and can in turn result in a  fatal bleeding disorder.  Having healthy platlets is critical as they are clood clotting factors; without them, blood turns to near water causeing uncontrollable external and internal bleeding.

 

    

 

 

 

 

 

 

All that being said, I cannot begin to express what a comfort and blessing it was to have the Ronald Mcdonald House of Chapel Hill to come "home" to after long, exhausting days at the hospital.  The rooms were so warm and cozy, and then there's the "extras" they provide including delicious meals and stocked pantry, laundry, and transportation back and forth to the hospital.  Even when under construction, it was livable; I can honestly say I couldn't tell you of a single complaint. The entire staff was so caring, sensitive and available; they have a genuine concern for your child and empathy for what you are dealing with.  They worked hard to make us comfortable as possible, and always looked for ways to give us a beak for a couple of hours by giving us event tickets or gift certificates donated by local restraunts.  It was also comforting to talk with the other families there and learn you're not  the only one facing a challenge; we seemed to find the strength in each other to keep going.