Doron and Shealagh Weber were devoted, intelligent parents whose commitment to addressing Damon’s medical problems began when he was born and continued unabated over the years. At the same time, they worked to maintain a normal life for all three of their children, despite the disruptions caused by Damon’s condition and treatments: the two heart surgeries, a hernia operation, attacks of nausea and asthma, a gravely serious illness called PLE, or protein-losing enteropathy, and ultimately a heart transplant.
The family strictly maintained its habits and schedules: for school, where Damon excelled academically and was becoming a promising young actor; for August vacations in Scotland, on the Isle of Skye, where Shealagh had old family connections; in preparing for Damon’s bar mitzvah and for rigorous entrance exams for some of New York’s top high schools. During these years they also experienced the cataclysm of Sept. 11, 2001, and the death of Shealagh’s father in Germany.
Over the course of Damon’s illness, Doron Weber meticulously studied every aspect of his son’s condition. A director of programs at the Alfred P. Sloan Foundation and the author of two medical books, Weber was able to call upon eminently qualified friends and associates all over the world and to attend an international symposium of world experts on PLE.
Although few have Weber’s contacts, all parents of critically ill children will be familiar with the unflagging, watchful care Doron and Shealagh brought to bear upon their son’s health. Parents will be familiar, too, with Damon’s refusal to be defined by his disease or by the limitations it placed upon him. Sometimes he was willing to take responsibility for his health, and sometimes, especially as a teenager, he wasn’t. Weber writes, “Damon just wants to lead a normal life.”
“Leading a normal life” could mean going outside on a winter day without a coat or skipping a protein-filled meal, both dangerous to his health. How could his parents provide a balance between the child’s desperate wish to be “normal” and their own struggle to keep the child alive, while trying not to seem desperate themselves?
In this situation, someone has to take charge. For Damon, it was his father, a tireless, loving guardian of the family’s well-being and a fierce watchdog over his brilliant, ailing son. Damon’s mother was just as deeply connected to her son and to all their children, but in the ongoing struggle that was Damon’s medical condition, Doron was the project manager, guiding an incomparably important effort that was elusive, ever-shifting and never entirely in his hands. Like a determined and lonely warrior, the author writes of his personal quest, “I scour the earth in search of a cure for Damon.”
There is no more diligent health-care monitor than a parent like Weber. It is not possible for any medical practitioner or care provider to exercise the same around-the-clock, moment-to-moment loving surveillance that such a parent offers. The medical community, with some notable exceptions, was bound to fall short of Weber’s expectations, and it did.
This does not mean that Weber’s complaints were unfounded. There were some appalling lapses in Damon’s care: a prescription error that resulted in his receiving 10 times the approved dosage of his heart medication, a mistake in the boy’s transplant classification that could have cost months of unnecessary waiting, a five-hour delay in urgent post-transplant medication and what looked like an overall pattern of carelessness in post-transplant care. Other families of transplant patients advise anyone undergoing this procedure to have an advocate present at all times, especially following the surgery. Damon came through his transplant surgery well, but a deeply troubling sequence of events followed. Weber’s fury appears to be both understandable and justified.
But frustration and rage are not the story here. The story is Damon himself, his life, his loyalties, his courage, his eloquence (Damon’s blog excerpts alone make the book worth reading) and his family, all rendered with love, humor, pain and exquisite clarity. Beautifully told and skillfully paced, surprisingly joyful at times, this memoir above all presents an extraordinary young life. In the brightness of this life, the realities of illness, pain and medical imperfection are secondary for the reader, and ultimately disappear. The radiance remains.
has written a number of books for children and adults, including “Forward From Here: Leaving Middle Age and Other Unexpected Adventures.”