The Murphy Boys

in the first twelve hours

Posted by in Ayrie, MEEI

My aunt laura came to MEEI soon after Ayrie died. She drove through the middle of the night, pulling over to cry, pulling herself back together to be there for me. My dad had a surgery scheduled for that morning so my mom, of course, was with him. The pediatric floor is on one long hallway with locked doors at one end. I remember seeing the doors open and a nurse ushering Laura in. I was so relieved. I suppose we hugged. I suppose we cried. But these moments are…read more

King of the OR

Posted by in Ayrie, MEEI, RRP

We just returned from New England and Ayrie’s 21st surgery. We went to our favorite hospital with its supremely talented staff, Mass Eye and Ear Infirmary. A lot of friends, new and old, stopped by to see us. The highlight for Ayrie this visit was the crown that Ashley, the child life specialist, made for Ayrie when we were waiting on the surgical floor for the procedure to start. When Nancy (the OR nurse) and Martin (the Anesthesiologist) wheeled Ayrie down the hall to the OR he was putting his…read more


travel funds…only helpful for those predictable diseases?

Posted by in Ayrie, MEEI, travel

For those of you who are new to this website, my son has JORRP, which you can read about here, and you can read more about his story here. Ayrie’s breathing is deteriorating.  I don’t know if it’s regrowth of the papillomas blocking his airway or a side-effect of the medicine he takes.  I don’t want to goto the local hospital where they know nothing about this disease and have them admit ayrie, run a lot of tests that don’t give them the right information and then force me to sign him…read more


Ayrie’s 18th Surgery, Dec 28 2009

Posted by in Ayrie, MEEI

We were back in Boston this December for another surgery. As usual, Ayrie was so excited to be there. In fact, on Christmas morning Ayrie ran around the house waking up the aduls and when Emily asked him if he was excited that it was Christmas morning, he said, “Yes, and I am excited that I am going to Boston soon!” We checked in to the hospital at 8am and the nurses were happy to see us again. By now we have made some friends! I looked at the board…read more