"The human spirit is stronger than anything that can happen to it."
-George C. Scott
An Excerpt from Summer's Complaint...
It was August 9, 1969. A Saturday. I woke and ambled sleepily into the kitchen. The smell of my father’s freshly made Swedish egg coffee wafted through the room. Karen and Mom stood in front of the sink, talking quietly. I didn’t think they saw me standing there in the doorway, but they stopped speaking and their eyes locked. I sensed it was a serious, grownup conversation. Even at the age of ten, I knew that whatever they were discussing I wasn’t prepared for it. But instead of running away, I looked down at the hem of my nightgown and waited for the bad news I knew must be coming.
“Markie died, Laura,” my mom said. Then she and my sister turned back to the sink and continued talking in those soft, hushed tones.
It was one of those moments where you find yourself dragged, unwillingly and ruthlessly, into adulthood. I'd just finished fourth grade and wasn't even interested in boys yet. I was hardly ready to come to terms with death. Much less the death of a small boy whose shoes I’d helped put on before we went out to play in the sandbox together and who’d spent countless hours snuggled on my lap as I read him his favorite stories. I stood there motionless trying to form some words—any words.
“You didn’t tell me he was going to die,” I said, spitting out the words with a vehement snarl. “Why didn’t you tell me?”
The neckline of my nightgown was wet with tears, and I pulled it up in an attempt to cover my face. I felt betrayed. And hurt that none of them had seen me as adult enough or emotionally strong enough to be told the truth: that my nephew’s chances of surviving the hepatoblastoma—a hard tumor cancer of his liver—were practically zero. Not even Mayo Clinic could save him. But the adults in my life hadn’t prepared me for the inevitable. I was angry and suddenly much older than I could process at ten years old.
Summer’s Complaint is the story of my family’s century-long battle with a devastating inherited cancer syndrome known as Familial Adenomatous Polyposis, or FAP. But more than that, it is a saga of the irrepressible spirit of hope and indomitable resilience in the face of adversity and profound grief:
“I thought there might be something wrong with
your mother’s family.”
Those words, spoken by a grandmother to her eleven-year-old
granddaughter, sparked a search for answers to a mystery
spanning five generations...
Familial adenomatous polyposis is a rare, genetic cancer
predisposition syndrome caused by a deletion mutation in the APC gene on chromosome 5. By the age of fifty, nearly 99 percent of
untreated patients will have developed cancer.
This is the dark shadow that has lingered over one
Midwestern family since at least 1911, when Mary Regan Baker
was seen at Mayo Clinic in Rochester, Minnesota for symptoms of
a disorder that would become commonplace in her descendants.
Through deeply touching personal stories of love, heartbreak,
and hope, Summer’s Complaint explores the meaning of family
and how tragic loss leads to the remaking of life in the
face of a rare genetic mutation.
Location of APC on Chromosome 5
There may be as many as 7,000 rare diseases. The total number of Americans living with a rare disease is estimated at between 25-30 million. This estimate has been used by the rare disease community for several decades to highlight that while individual diseases may be rare, the total number of people with a rare disease is large.
-National Institutes of Health
The author and her writing partner, Bella