From Chicken Soup for the Teenage Soul IV

False Hope

Hope, the patent medicine For disease, disaster, sin.

Wallace Rice

My sister smiled when the doctor pronounced that she would die. Of course, her smile wasn’t a reaction to what she had just heard—she was only a baby then, completely incapable of understanding the fate that would befall her. An innocent giggle escaped her lips, and my heart broke.

The night before, we had received a call from a technician at the Yale–New Haven Hospital. The message he had left had been cryptic, revealing only that Lindsay had Canavan disease. What was Canavan disease? The technician had no idea, and even my father, a physician himself, had never heard of it. Now, here we were at the hospital to speak to someone who could decode those frightening words.

The walls echoed medical chatter from the hallway and the room reeked of formaldehyde, while the mahogany conference table and upholstered pearl-white arm chairs tried uselessly to disguise the fact that we were, indeed, in a hospital. The geneticist’s nametag read “Sharon Pearl, M.D.,” although I’m sure that the chair color was just a coincidence. She sat with her legs crossed and her elbows on the table, hands clasped in front of her. Her fingers did not twitch or tap but remained firmly locked, giving the impression of someone who is so used to bearing bad news that it no longer fazes her. Directly across the table sat my parents, bracketed on either side by my sister Samantha and me. In the secure cradle of my mother’s arms lay Lindsay, barely three months old, with a wisp of blonde hair falling about her forehead. She and Dr. Pearl were the only ones in the room who appeared relaxed—she for knowing too little, the doctor for knowing too much. The rest of us were tense; my father wrung his hands, my mother gripped his knee, and Samantha and I exchanged worried glances. Dr. Pearl cleared her throat.

“As you already know, urine tests have indicated that Lindsay suffers from Canavan disease.” She stressed the word “Canavan,” as though saying it put a bad taste in her mouth. She went on to explain its origin: the inheritance of a recessive allele from both parents. The parents in question nodded in understanding, but their eyes reflected both the impatience to hear the prognosis and the fear of bad news. Dr. Pearl’s next words ended the impatience but confirmed the fears.

“Children with Canavan disease face immediate and constant deterioration, including blindness, difficulty chewing, difficulty swallowing, loss of head control and profound mental retardation. They are never able to walk, speak, or feed themselves. . . .” Here she paused, and for the first time, I saw a glimpse of compassion in her eyes. Hopeless compassion.

“ . . . and they seldom reach the age of ten.”

The silence was deafening. I thought that I might vomit all over that nice mahogany table. Pins-and-needles numbness took over my extremities, thankfully, or I might have lashed out and hurt someone. Possibly “Dr. Pearly White” and her lovely matching chairs. Possibly myself.

Years (or perhaps minutes) later, I regained enough internal composure to look around and gauge everyone else’s reactions. Samantha, only eight, wore the confused and helpless expression of a lost puppy. My father stared directly at the doctor, his eyes wide but glazed, and I knew that he was seeing nothing. My mother, usually so cool and composed, had already broken down; her eyes were squeezed shut and tears were carving their way down her cheeks in black mascara rivers. Her mouth was twisted into a sorrowful grimace, and I thought that her noiseless sobs might choke her. It was only at this moment that I noticed Lindsay, the cause of all this muted mayhem. She was completely oblivious, and she was smiling. The smile began at the edges of her cheeks and reached up to her enormous grey eyes. They were creased at the corners from the smile and framed with unusually long lashes. Her pupils were slightly dilated and sparkled with life but stared straight ahead, not moving to focus on anyone or anything. It was my first clue that the doctor was telling the truth.

My father was the first to break the silence, as he coughed, blinked and addressed the doctor. “Is there any treatment? Is there any cure?”

“I don’t want to raise any false hopes. There is nothing. Nothing can be done for her. She’ll only be a burden to your family until she dies. I can recommend some good institutions where she’ll be safe and happy. There’s nothing that you can do.” She stood up. “I can also recommend some support groups. I’m sorry I had to be the one to give you this terrible news,” she concluded, and with a polite nod, she left the room.

Dr. Pearl was my first glimpse into the pessimism that all too often accompanies knowledge. To imagine putting my beautiful sister in an institution until she died of a seizure, or choked on her own saliva, or even passed away in her sleep. To even consider the possibility! To be Dr. Pearl and put forth the suggestion!

Clearly, I wasn’t the only one shell-shocked. As soon as the door shut, a communal sob-fest burst forth in the room. After ten minutes of hugs and kisses and wet cheeks, we all simply stopped and turned to my father.

“There’s got to be something,” he said. “I’ll find it.”

He tried; God knows he tried. The very next day, he cancelled his office hours and hid in the medical library at Danbury Hospital, searching desperately for information on any sort of treatment. The war-weary look in his eyes when he stumbled in the door late that night revealed his lack of success. Still, he didn’t give up—Lindsay needed help, and she was going to get it. He—we—wouldn’t stop until she got it.

After his failure at the library, my father took a new approach. Utilizing his connections as a medical professional, he began calling colleagues, asking if they knew anyone who might be able to help. Each colleague told him something like, “Well, I have the name of this neurologist . . . but I doubt that it will amount to anything. Just go home, get some rest.” Rest? Hah! So my father would call the neurologist or researcher or scientist—and oftentimes find himself on the other end of a dead phone line. “Canavan disease?” said Dr. Branson, director of a leading research institute. “Forget it.” Click. “It’s a pie in the sky,” declared a geneticist from a government regulatory agency, “You’re wasting your time.”

Each night, as we lay in bed, Samantha and I could hear my father’s footsteps on the stairs, increasingly heavy by the day. “Any luck?” my mother would whisper, always cautious of waking Lindsay. “Not yet,” he would reply, “but there’s a researcher at the University of Pennsylvania that I have to call tomorrow. . . .” Always optimistic, always filled with hope. I dreaded the day when my father would walk in and say, “No luck, and I have no one left to call,” and we would be forced to admit that the words of Sharon Pearl, M.D. rang true: “I don’t want to raise any false hopes.”

We were lucky: that never came to pass. After searching the globe for a researcher whose hope matched our own, we found Dr. Mathew During and Dr. Paola Leone working at Yale, the very university at which Lindsay had been diagnosed months earlier. After all those locked doors, we had finally found brilliance and compassion tied together in a small sliver of hope. Their lab was currently working on gene therapy for Parkinson’s disease, but During and Leone agreed to convert their research into gene therapy for Canavan disease. Lindsay was beautiful, they agreed. They, too, had hope.

Today, Lindsay is ten years old. An age that Dr. Pearl—and many others—believed she would never reach. Only a year and a half after her grim diagnosis, she became the first person in the world to undergo gene therapy of the brain. She has undergone the same treatment thrice more, her condition improving markedly each time. She sits in a wheelchair and cannot speak or feed herself, but she can smile. She can laugh. She can indicate when she is thirsty, or full or tired. And she lives at home, with her family, where she belongs—not in some cold, antiseptic facility devoid of love and feeling and happiness. Devoid of hope.

I live every day with hope; the emotion that allows us to always look for the sun behind the clouds. Hope has prolonged Lindsay’s life, and more importantly, her quality of life. What if we had listened to the “experts” who told us to stop trying? What if we had lost all hope?

Dr. Pearl’s words about false hopes have become a sort of running joke in my family. Who can define what hope is “false”? Our hope in Lindsay fills our days and nights; without it, we would simply be automatons robotically taking care of a woebegone child. Without hope, we would be lost. We cannot be afraid of it. There is no such thing as false hope.

Molly Karlin

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