The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son
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“[A]n intimate glimpse into the life of a family that cares around the clock for a disabled child, that gets so close to the love and despair, and the complex questions the life of such a child raises...It is a beautiful book, heartfelt and profound, warm and wise.”
Ian Brown’s son Walker is one of only about 300 people worldwide diagnosed with cardiofaciocutaneous (CFC) syndrome—an extremely rare genetic mutation that results in unusual facial appearance, the inability to speak, and a compulsion to hit himself constantly. At age thirteen, he is mentally and developmentally between one and three years old and will need constant care for the rest of his life.
Brown travels the globe, meeting with genetic scientists and neurologists as well as parents, to solve the questions Walker’s doctors can’t answer. In his journey, he offers an insightful critique of society’s assumptions about the disabled, and he discovers a connected community of families living with this illness. As Brown gradually lets go of his self-blame and hope for a cure, he learns to accept the Walker he loves, just as he is.
Honest, intelligent, and deeply moving, The Boy in the Moon explores the value of a single human life.
hydrocortisone, amoxicillin, azithromycin, clarithromycin, erythromycin (ever wider on the spectrum of antibiotic strength), cisipride, Keflex, Betnovate, Flamazine, lactulose, Colace, chloral hydrate. They sounded like the names of ambassadors to an intergalactic conference of aliens. His chronic constipation (his muscles were too weak to move things along normally), made worse by the equally necessary chloral hydrate, often required not one but three drugs—lactulose as a sugary starter, Colace
cases. CFC was a mystery, and an arcane one at that. That didn’t stop Conger. A slim woman with reddish-blonde hair and worried eyes, she gives the impression of having two or three lists in her mind at all times—all things she has to get done by sundown. The year Cliffie was diagnosed, her brother, Carl, committed suicide. Her boy’s troubles took her mind off the tragedy. “CFC has just been a lucky thing to be involved in,” Brenda explained the afternoon I met her, eleven years later. “CFC is
his own. In some way I was there to find out if I was letting my son down. I unpacked my bags and sat down at the table in my room’s small kitchenette to look over the questions I planned to ask Vanier that afternoon. I had a page or two of notes prepared when there was a knock on the door. I opened it to a tall man wearing a beard and a red sweater. He immediately offered me some water. I said yes, invited him in, and offered him a seat at the kitchenette table. He was sixty-four years old, but
are difficult and which are not, and we discuss what a dance means, how the movement of the body can make the mind feel things. On those evenings with my graceful daughter, in our seats near the stage, I am grateful that my life has been touched by good fortune and grace. One night we went to see the National Ballet of Canada performing Glass Pieces, originally choreographed by Jerome Robbins to the chanting instrumental music of Philip Glass. Row after row of evenly spaced dancers paced across
still mostly a detective game of observation and hunches. Symptoms overlapped with other syndromes, and misdiagnoses were common. Shprintzen syndrome looked like CFC—Saunders almost fell for that one—but it wasn’t the same: those kids had eyebrows. Noonan syndrome was far more common than CFC, and shared many features, but usually produced much milder developmental delays. Ditto Costello syndrome, with the difference that Costello children had “softer” features (whatever that meant) and were more