by Geeta Anand
At 4 p.m., the gang was back in the handicapped van, John at the wheel, heading to the Magic Kingdom. Traffic jammed the roads, making it a slow trip. It took an hour to make the ten-mile journey. John, swearing, pulled into the Disney World parking lot. He followed the blue painted lines leading to the handicapped section until an attendant leaped in front of the van, waving a flag.
“I’m sorry, sir, but the handicapped parking lot is full right now,” he said.
“This cannot be happening,” Aileen said, pinning John with a stare that said Do something.
“I feel like Clark Griswald hearing that Wally World was closed,” John quipped, alluding to the Chevy Chase comedy, National Lampoon’s Vacation, in which a family travels across the country to a theme park and arrives to find it closed.
Rolling down his window, John said politely but firmly, “I’m sorry, sir, but we’re here for my daughter’s Make a Wish trip. We’ve come a long way for this.” He was certain that invoking the magic words “Make a Wish trip” would cause the man to apologize and usher them in.
But the attendant shook his head and repeated, “I’m sorry, but the handicapped parking lot is full.”
“Sir, I have two seriously disabled children here, and they’re going into the Magic Kingdom. Right now,” John said, his voice dangerously level. Then he pointed ahead to a flower bed shaped like Mickey Mouse and said, through clenched teeth, “See those beautiful flowers there? Well, I’m going to park this van right on Mickey Mouse’s head if you don’t get out of my way.”
As Aileen breathlessly awaited the outcome, the handicapped van lurched forward and the attendant leaped aside. “Mister John, no!” Sharon yelled from a rear seat. The kids gleefully clapped their hands and cheered. The van circled the lot twice, then pulled into a spot marked “No Parking” in bright yellow.
“I dare them to tow a handicapped van,” John said, still fuming as he jumped out.
Aileen leaned into the back of the van, whispering to Sharon, “It’s going to be harder than I thought to get him to relax.”
“You’re telling me,” Megan chimed in, rolling her eyes.
Megan led the way into the Magic Kingdom, one hand in her father’s, the nurse Yvonne pushing her red wheelchair. Patrick followed in his wheelchair, holding Aileen’s hand. Her parents, Marty and Kathy, had flown to Orlando and joined them at the villa that afternoon, and they brought up the rear, John Jr. between them.
The river of people on Main Street USA flowed jerkily by, coming to a halt every so often as tanned, chubby children stopped and gawked at the tubes coming from Megan’s and Patrick’s necks. After a few minutes, Megan pulled her hand out of her father’s and put it under her chin, her posture when she felt self-conscious. With a pang, Aileen realized that her daughter who had been so confident despite her handicap was now old enough to notice when people stared at her. Behind her, Patrick, always uncomfortable in crowds, twisted and made whimpering sounds of discomfort. Aileen looked up to see that they were still a couple hundred yards from Cinderella’s Castle, and she began to think maybe the whole trip had been a crazy idea.
Suddenly, the crowd broke into a cheer. The children who’d been staring at Patrick’s ventilator swung away, bouncing with excitement, and with a wave of relief, Aileen saw Mickey Mouse up ahead beside Casey’s hot dog stand, heading in their direction. He seemed to see the wheelchairs from afar because he reached his arms out and bounded in their direction. John Jr., scared of the life-sized characters, dived behind Patrick’s wheelchair.
Seconds later, Mickey Mouse knelt in front of Megan’s wheelchair.
“Mickey Mouse, this is Megan,” John said proudly, making the introduction. Mickey Mouse threw his arms around Megan and touched his face to her cheek, making a loud kissing sound.
“I love you, Mickey,” Megan gushed. She took her chin off her hand and looked up from one parent to the other, bursting with excitement. “Can we live here, Daddy?” she asked.
Hearing Patrick squealing behind her, Aileen grabbed Mickey Mouse—who was, by now, fawning over other children—and drew him toward her youngest son. “I have someone else here who’s dying to meet you,” she said. As Mickey bent down to nuzzle his neck, Patrick flapped his arms excitedly.
Next, the Crowley entourage—parents, grandparents, kids, and nurses—moved in the direction of the Toon Town Hall of Fame tent, a big store that shot off into smaller rooms where the characters met visitors. When they got to the store, a long line awaited them. The attendant took one look at the wheelchairs and the big circular Give Kids the World pins on Megan’s and Patrick’s chests and ushered them in the back door.
“What character do you want to see first?” he asked.
“Cinderella,” shouted Megan. John and Aileen followed as Megan was led into a back room where the princess met visitors.
“Oh, hello, Megan,” cooed Cinderella in her familiar powder-blue ballgown, her voice low and velvety. “Can I kiss you?” she asked.
Megan nodded vigorously and Cinderella bent down, leaving the imprint of her bright pink lips on Megan’s face.
Back in the waiting area, Aileen watched as John pulled out a tissue to wipe Megan’s cheek, and his daughter covered the imprint with her hands and loudly admonished, using her new favorite line, “You have got to be kidding.”
John burst out in laughter—and for the first time since the vacation had started, Aileen realized that even he was caught up in the magic.
For her part, Megan would refuse to wash her face for the rest of the week-long trip.
The next morning, the phone began to ring again for John, who was managing every detail of the latest round of venture capital financing from Disney World. The only phone in the villa had a yellow receiver and a standing Mickey Mouse on the base. Aileen picked up her camera to document John in serious discussion with Mickey Mouse under his chin. She listened as he made concession after concession.
“Wow—you really gave it to them,” she teased when he had finally hung up. John put on a pair of Mickey Mouse glasses and picked up the receiver to pose for another picture, re-creating the conversation the way he wished it had gone. “You asshole, you listen to me,” he shouted into the phone, waving his arms furiously. “We’re going to do this my way, you understand?”
It was so nice to see John able to joke about his work, Aileen thought on the ride back to Disney World that afternoon. Of late, she knew he’d been bowing under a “the weight of the world is on my shoulders” attitude.
“What are you going to see today, Megan?” John asked. “I’m going to go on every ride two times,” Megan replied.
“How about you, Patrick?” Aileen said, making sure he didn’t feel left out. He pointed at the rear window—wanting to go back home.
“You know, Aileen, he’d be happier lying in bed at the hotel watching Disney cartoons,” John said.
“I know, but he needs to get out,” Aileen said, turning back to look at Patrick. “You wait, honey, I just know you’re going to have a good time.”
And for the next hour at Disney World, Patrick forgot he had wanted to go home. He waved to Megan as they rode together with their parents, nurses, and grandparents on It’s a Small World, a little boat ride that went through a tunnel with children from different countries waving and singing and dancing. But once he got off the ride, he began to cry again, pointing in the direction of the exit. John and Sharon took Patrick back to the hotel, while the rest of the crew continued to shepherd Megan and John Jr. through the Kingdom.
Two hours later, John came dragging into view at Cinderella’s Castle, where the group was waiting for Story Hour with Belle to begin.
“You’ll never believe my afternoon,” he said, and Aileen knew he was about to launch into one of those horror stories that was only funny in retrospect.
“Go on, tell me about it,” she said, shaking her head and sighing. “What happened this time?”
John said Patrick had screamed all the way to the Mo
norail, hating the heat and the crowds. When they finally got on the train, John’s cell phone rang, bearing bad news from his secretary—he had bounced the paychecks of seven nurses that week.
“Jesus Christ,” he had shouted, proceeding to loudly direct the transfer of money from one account to another. All the while, Patrick continued to cry hysterically. Sharon, trying to divert him, tried music—belting out the theme song for the Mickey Mouse Club: “M-I-C-K-E-Y M-O-U-S-E, Mickey Mouse.”
John said he hadn’t been able to hear over her screechy voice, and he’d roared at her to be quiet—and then noticed Patrick’s favorite little plastic Peter Pan had fallen on the floor. Still on the phone, he handed it back to Patrick, who flung it back down.
“If I wanted it, asshole, I would have asked for it,” Sharon mimed in a high-pitched voice for Patrick, evidently smarting from John’s shushing. Sharon’s foul mouth had always amused John, and he was guffawing loudly when a primly horrified woman’s voice from the seat across said, “Children, quick, cover your ears!”
“You wouldn’t believe it, Aileen,” John continued. “Perfect Family was watching us curse up a storm in, of all places, Disney World. There was the thin, blond mother; the tall, handsome dad; and two daughters—dressed in identical Laura Ashley dresses. It was classic.”
Aileen howled with laughter. She—and only she—knew exactly what he was talking about. The previous Christmas, they had settled upon a defense mechanism for the flood of cards bearing the faces of families with healthy, beautiful children. It was hard to look at the cards without feeling overwhelmed with some degree of envy. Those families were flaunting what John and Aileen wanted more than anything else and might never have: healthy children, a normal family, a carefree life. The technique was very simple, and she wished they’d thought of it sooner. Perfect Family was perfectly easy to mock.
“Another Christmas card from Perfect Family,” Aileen had taken to saying in a singsong voice, handing John the next picture.
Aileen was still giggling about her husband and Sharon making such a scene in front of the latest Perfect Family when Belle appeared, announcing that the show was about to start. Then the princess began to invite members of the audience to act in her play, and Megan’s wheelchair caught her attention. She picked John to join her onstage and play the beast. A born ham, he smiled and bounded onstage.
When Belle said, “The beast is angry,” John roared. When the evil Gaston stabbed the beast, John fell heavily to the ground. John knew the story well because Megan watched the Belle video at least once a day, so he didn’t need to be told to lie on the ground motionless until Belle had tended to his make-believe wounds and helped him to his feet.
When Belle said “Thank you for coming” and brought the play to an end, Aileen could tell John was perplexed. He had been waiting expectantly—and taking a step in Belle’s direction—just before the play ended. Then Aileen remembered that the movie version ended with Belle kissing the Beast. “You know, kids,” Aileen giggled. “Daddy was waiting for Belle to kiss him.”
“It’s not going to happen,” Megan said in her perfect preadolescent imitation, shaking her head and smirking with her voice. “Never going to happen.”
Then Belle jumped off the stage and greeted Megan. She presented Belle with a picture she had drawn for her.
Aileen watched as John tried to coax Megan to go back to the hotel.
“You have got to be kidding,” Megan shouted. As usual, she got her way with her father, and the next time Aileen caught sight of them, John was holding Megan up on a horse on the Cinderella Carousel, her ventilator slung over his shoulder.
They were still in the park when night fell because Megan insisted on staying to see the fireworks. As Tinkerbell danced across the sky and the children screamed with excitement, John kissed Aileen and whispered, “Honey, you were right. How could we not bring the kids to Disney World?”
Aileen relaxed into the hammock of his arms and drifted on the comfort of the warm tropical evening, watching the riotous explosions of color against the dark sky. Whatever the future held—whether John’s Special Medicine got delayed, defeated, or never even made, whether Patrick would someday walk or Megan never breathed without a ventilator again—at least now they had something lasting to hold on to. They had these memories of having fun together as a family.
19
The Bluff
Spring 2001
Oklahoma City, Oklahoma; Cambridge, Massachusetts
The Monday after his return from Disney World, John flew out to Oklahoma City, filling a legal pad on the plane with the plans racing through his head. He was still convinced he had to sell Novazyme, not only because he knew there was no way to get the drug ready in time, but also because he’d come to understand it would take tens of millions of dollars more to produce enough enzyme for the trials. He was an optimist, but even he couldn’t see how he could raise that much money based only on animal data in a quickly cooling financial market.
Still, he kept these realizations to himself. If he admitted that the September trials were not feasible, he worried that every worker at Novazyme might let up and fall even further behind. And he didn’t believe for a minute he could afford to level with his investors—at least not while keeping them.
The idea of selling Novazyme was not entirely new. Genzyme had been courting John about a potential acquisition since he’d introduced himself several months earlier to chief executive Henri Termeer at a biotechnology conference in Laguna Niguel, California. From what John could tell, Genzyme had made deals to develop Pharming’s and Chen’s enzymes, run into problems with both, and needed to find some way to salvage its drug development program for Pompe disease. So John thought that his plan of selling to Genzyme was entirely within the realm of possibilities—except for one thing.1
On his notepad he wrote “Obstacles,” and beside it, in capital letters, “PRICE.” After the latest round of financing, his venture investors were even more firmly in control of Novazyme, and their demands for a significant return on their investment were increasing. Would he ever get Henri to offer enough for Novazyme for his investors to go along with a sale?
It would be extremely difficult because John’s three venture investors—HealthCare Ventures, Perseus Soros, and Catalyst—had together already put in more than $24 million, including the $8 million pledged contingent on the September commencement of trials. Like most venture funds, they hoped to at least double or triple their money. Together, they owned a little over half of the company, which was valued at $51 million after the most recent B Round. That meant that for the investors to make their desired return of twice or thrice their investment, John would have to sell Novazyme for between $100 million and $150 million.2 It was hard to imagine how Genzyme might pay anywhere near that amount considering that he had heard through the biotechnology rumor mill that the company paid only a fraction of that amount in its two previous deals for Pompe enzymes—$17 million for Pharming’s rabbit enzyme and $20 million for Chen’s program.3
“Genyme prepared to pay $20 million, tops,” he wrote.
Next, under “Obstacles,” he wrote “BioMarin.” When he had mentioned Genzyme’s overtures in the past, his investors had made clear that unless that company made an extraordinary offer for Novazyme, they preferred to wait an extra year or two until Canfield could move his science into human clinical trials, and then take the company public. These investors were salivating over the story of BioMarin Pharmaceutical, the tiny biotech firm that had been interested two years ago in Martiniuk’s enzyme. That company had gone public in 1999 with no products to sell—just a single experimental medicine in human trials for a related disease even rarer than Pompe. BioMarin’s market cap had soared above $1 billion, and some of John’s investors were convinced that Novazyme could turn into another BioMarin in a couple of years.4
Waiting two years might mean a windfall to investors, but it was out of the question for John. His children weren’t going to li
ve that long, and neither were many other Pompe patients worldwide.
But while he wasn’t willing to wait until the company could go public, John knew this was a business, not a charity. The thought of asking his investors to accept a sale at a lesser profit for the sake of his kids didn’t even enter his mind. He knew the hard truth: in the world of venture capital, his children’s lives meant absolutely nothing.
There was only one way to get Genzyme to pay a high enough price. It would not be for the purchase of a third enzyme for Pompe disease, especially one not even tested yet in human beings. But Henri might pay a whole bundle more if he believed Novazyme was developing a better treatment for his company’s core business, threatening its flagship, $540-million-a-year-in-revenue Gaucher disease drug, Cerezyme.5
And it wouldn’t be a lie, exactly. Canfield had always said his technology of adding the right sugar combinations could make enzyme treatments for most of the forty-nine diseases caused by different lysosomal enzyme deficiencies. John had said as much in his own business plan, which promised a new enzyme therapy every eighteen months. But Gaucher wasn’t even on the list of the top six candidates for Novazyme enzyme development; it made more business sense to develop medicines for the many untreated diseases first than to compete head to head with one of the biggest biotechnology companies in the world.
Unless, of course, you wanted Genzyme to buy your company.
In the business world, what John and Canfield did next was known as the “strategic positioning” of a company for sale. Everywhere else, it was known as bluffing.
The next day, as John sat with Canfield in his corner office, he put on the table what senior management at the company already sensed, though never voiced aloud: the September goal for beginning clinical trials was out of reach. He told Canfield his belief that the investors wouldn’t put in the next $8 million come September, and the company would then be out of money again. The economy was slowing down, which would make it difficult to find another source for the tens of millions in additional funds needed to enter clinical trials.