November 14, 2003

Remembering those who are impossible to forget

"Stephen would say to me, "promise you'll never forget me," and I never will, nor will the many people who were touched by him." These words were spoken by Carole Trainor about her son, Stephen, who died Feb. 13, 2001 at the young age of 8 after a grueling battle with adrenoleukodystrophy, a rare metabolic disorder.

Trainor was one of several parents who spoke Nov. 2 in the O'Keeffe Auditorium at the annual Comfort and Support After Loss ceremony, sponsored by a team of caregivers from MassGeneral Hospital for Children. The event is meant to bring MGH staff together with parents and family members who have experienced the loss of a child to offer comfort and support to one another. The emotional ceremony included readings by family members, moving words of remembrance from MassGeneral Hospital for Children staff, musical performances by the St. Florence Choir and the Wakefield Repertory Theatre, and a naming ceremony in which parents received a gift of a flower bulb and a pewter heart and then read aloud the names of their children.

"It always seems so futile when we lose a child," said Alan Ezekowitz, MBChB, DPhil, chief of Pediatrics for MassGeneral Hospital for Children. "But our heroes — your heroes — live on, and they serve to inspire and remind us that we must never rest in our quest to find new and better treatments. We are making progress."

The ceremony ended with a video presentation featuring photographs of all the children honored and remembered. A reception was then held in the Wellman Conference Room with catering services donated by J. Pace & Son, Inc.