Trispero Page 7

  “We have him under surveillance, but it’s not clear yet as to how close he may or may not be.”

  “I want his research. If you can’t get it, make sure that it goes no further.”

  12

  SEATTLE—2014

  “Daddy, Daddy, you promised. Come on, get up.” “Come on, Lily, Daddy had to work late last night. Give me a sec.” Jason looked up at Lily standing over him with that huge smile on her face. Her right front incisor was missing so when she smiled she would occasionally bite her lower lip and push her tongue through the hole where her tooth should be. Any hope Jason had for resisting her was gone with that smile. Now fully awake, Jason returned her smile.

  Lily loved the fruit tarts at the French café up the hill, so their agreement was he would get her a tart if she walked to the park with him. She was already dressed and ready to go, so Jason rolled over and looked at the clock. It was 9:45. Oh man, I can’t remember the last time I slept this late. At least the bakery will still be open.

  It had been a late night. After having dinner and putting Lily to bed, Jason had worked on the program data that had come back after Lily’s speech pathology appointment. He felt like he was getting so close. Ever since Rachel’s death, Jason had felt there was a connection between Lily’s chromosomal disorder and maybe something that could have helped save Rachel. There was something else on that 21st chromosome that explained why Lily never got infected. There were a lot of things that characterized people with Down syndrome. The thing that Jason was most interested in was the lack of opportunistic infections that seemed to go along with it as well. There had never been a case of combined immunodeficiency in a person with DS, although there were cases of leukemia. Typically, the cases were very treatable and there were no reported cases of solid tumors in people with DS. Jason had spent the first several years of his career searching the 21st chromosome for an answer. He also helped tag the gene linked with Alzheimer’s. That was a great discovery but wasn’t really what he was looking for. Now he had the chance. His epiphany came when he was thinking about how they’d identified the Alzheimer’s gene. Jason realized he had a negative model, a mirror, that he could use to help map the gene, for combined immunodeficiency. He was so close. He could finally isolate a segment that differed substantially from the mirror genes on the DNA of children with DS on the 21st chromosome. His next task would be to splice the deficient gene into his model and see what happened. So close. If it worked, then there was hope he could cure the combined immunodeficiency and maybe even cancer.

  “I’m coming, I’m coming,” he answered Lily’s pleas.

  “Can we take Eleanor?”

  “Only if you walk with me to the park after we pick up treats.”

  “All right, if I get to sit shotgun.”

  “I think you’re going to be a lawyer when you grow up. I’m sorry you can’t sit up front yet. I will happily let you sit up front when it’s safe. I will, however, up the reward and get you a vanilla steamer with your tart.”

  “Deal!”

  Jason led Lily out to the front yard. It was brisk out, but beautiful. I’m glad we grabbed coats. Eleanor was in the garage, if you could call it that. It was barely big enough for the car, so he had to back out before Lily could get in. Jason carefully backed out, then exited the car to open the door for Lily. It was only a two door so he had to lift the seat for her as well. As he turned to go back to the driver’s side he looked at the neighbors’ silly Smart car. Behind the Smart car was a sedan he had never seen before. They were too far down the block for anyone to be parking for the coffee shop on the corner. It was empty, so the owners must be friends with the neighbors. Although, he admitted to himself, it was kind of hard to imagine what kind of friends they had.

  It was a quick drive. Jason was lucky to find parking, because the line was out of the door already. Through the big glass windows, he could see people ogling the cabinets trying to decide what they were going to have. Lily always got the same thing, but that didn’t stop her from looking. She put her hands on the glass cabinet and leaned forward until her face almost touched. She had learned not to put her face on the glass, because invariably she would leave a slobbery print. Then someone might say how nasty that was, and Lily would feel bad for just being a kid. The line moved quickly and they were soon back in the car driving home with plenty of treats, a vanilla steamer, and coffee.

  Jason left the car in the driveway while Lily gathered up the goodies. They carefully walked up the block past the neighbor’s car. The brisk morning was shaping up to be a spectacular day. As they turned left walking around the block toward the park, Jason noticed that the other car was gone. Lily reached up and took hold of Jason’s hand. It was such a natural thing; her hand fit so easily into his. They had done it so often it was almost impossible not to hold her hand. On those rare occasions when he walked this route alone, he felt naked and often reached into space for that little hand and then laughed when it wasn’t there.

  It was at these times that Jason would ponder what was really important. The touch of his little girl’s hand was more powerful than any drug. He had spent the last ten years watching her grow, laugh, and learn. She had a boundless ability to love and be happy, she was always excited to go to school, and she never missed an opportunity to make a new friend. What was it inside her that seemed to be able to turn on the lights in his world? What kind of world would it be if everyone embraced life like that?

  They walked past the tower at the entrance to Volunteer Park and found a small table next to a large piece of art that overlooked the Puget Sound. The view today was beautiful, and the park would soon be full. The sculpture was a large irregular stone with a hole in the center that you could look through and see the Space Needle. Jason turned to see Lily devouring her tart. Red fruit dotted her face, and sugar coated her chin. Without thinking, Jason reached out to wipe off her face. He knew that someday she would have to learn to do it on her own. But not today.

  With breakfast over, they packed up their garbage and headed back to the house.

  “Daddy, can I have a sleepover with Jessica tonight? She asked me at school yesterday.”

  “Sorry sweetheart, but I have to be on TV tonight. Maybe tomorrow. I was going to bring you with me to the TV station though.”

  “Promise you will call Jessica’s mom, promise, promise!”

  “Okay, okay. Let’s get home. I need you to help me pick out my clothes.”

  “Daddy, you’re a big boy. You should be able to pick your own clothes.”

  As soon as they got home, Jason called Jessica’s mom. Having friends over was a part of growing up, and despite how loving and loyal Lily was, not many kids wanted her over. She talked a little different, looked just a little different, and although DS wasn’t contagious you would never know it by the way some people reacted to her. Jessica was in one of Lily’s math classes. She had an unknown developmental delay that was not on any genetic test and thus was in a few of Lily’s classes. Most of Lily’s classes were with everyone else, but she got pulled out for math and had a reading specialist that she shared with Jessica. The phone call was quick. Jessica was busy tonight anyway, and although Lily couldn’t stay overnight, they would love for her to come over sometime.

  Alucia looked at Olivay with her lips just slightly pursed and eye brows furrowed giving him her best look of concern. “Papa, why would it be hard for Lily to have friends? She sounds fun.”

  Olivay returned her look with a smile. “That’s a very important question, and one that I don’t think the story can answer. People didn’t always accept what was different. In fact, sometimes people were persecuted because of their differences. We have learned over time acceptance and understanding. That wasn’t so in Lily’s world. The telling of this story and remembering of our history is important so we can try to avoid those mistakes.”

  Jason sat down to check his computer while Lily changed her clothes for the third time. The security to log on was pretty routin
e. He entered his name and password; there was an extra layer of security for his lab. He was just checking his email to see if the next round of experiments were ready. Jason rocked back in his chair, waiting for the updates to complete. As he got ready to settle in, the program popped open. That’s strange. It usually takes a minute to update when I log in first thing.

  Jason smiled while driving as he was reminded in the rear view mirror that Lily’s third clothing change had resulted in a horizontally striped dress with solid purple tights which only an adorable little girl could have pulled off. The station was downtown which usually meant horrible parking. Fortunately, they knew Jason was coming tonight and had blocked him a space. Jason took Lily’s hand and led her around the loading dock to the front entrance. There was a large glass door where they could see a man sitting behind a desk with several TV monitors. Jason pushed the button on the intercom next to the door.

  “Hello, can I help you?”

  “Yes, I’m Jason Roy with my daughter. We are here for our interview.”

  “Okay, just a second. Let me check.”

  A second stretched on for what seemed forever. Lily got anxious and Jason didn’t particularly like standing by himself with his daughter in this part of town. The Seattle Center was right down the block, close enough that he and Lily had to strain their necks to look up at the Space Needle. Even though it was old and much smaller than many of its downtown neighbors, it still held a special intrigue that captured almost everyone who looked at it. Even those that saw it every day would catch themselves looking to the sky as they walked past.

  “Mr. Roy, Mr. Roy!”

  “Sorry, yes.”

  “I am sorry for the delay. Please come in. They are waiting for you on the fourth floor.”

  Jason and Lily exited on the fourth floor to find a large table covered with food and drink. Staff from the TV station were milling around talking in front of the the large window that overlooked downtown. Just past the lounge area was the news set. Lily sat down at the table and watched the large TV screens situated on one of the walls. The station was currently playing the national programming on the extra screen Lily was watching. The national programming would play till it was local Seattle news time. There were pizza, cookies, and a smattering of other treats. The only thing Lily would have liked more was ice cream. Jason didn’t want Lily to gorge on all of the food but it wasn’t worth the fight, so he let her have a piece of pizza.

  “All right, Mr. Roy, we are almost ready for you. Our anchor Jodi Pietra will be moderating. Henry Geller will be joining the discussion from Gibson Labs.”

  Jason tried to hide his confusion. Since when was this a round table debate? Out loud, he addressed the gentleman for the station who was speaking with them, “I just thought you wanted to interview me about my research.”

  “Well, Gibson Labs contacted us about the story, and Mr. Geller was already in town. Do you have a problem with an open, honest discussion?”

  “Not at all. I’m just surprised at the change in format. I don’t have a problem discussing my research with anyone.”

  “Great, I will go tell Jodi you are ready to discuss your research with her and Mr. Geller.”

  Jason realized he didn’t know who he was talking with. “By the way, we haven’t been introduced.”

  “Thanks for asking. My name is John, John Lassiter, the producer of the show. Jodi is great at this so don’t worry.”

  Jason realized the situation was not ideal and that he was trapped. I can either do this and make the best of it or bail and deal with the fallout from the university. Not sure about this Geller guy. I have no idea what he actually does for Gibson Labs. Gibson Labs had created some of the prenatal tests that were being used to systematically evaluate children for genetic defects. Although the purpose of the test was supposed to be to prepare parents who were already at high risk, they were being used increasingly for screening and terminating pregnancies. Jason had been outspoken about this in the past and wondered if Gibson Labs was going to use this opportunity to ridicule him publicly.

  Jason took Lily’s hand and leaned over to speak with her “All right, sweetheart, Daddy has to go talk on the TV show, so you wait right here until I am done.” He gave her hand one last squeeze while one of the interns finished putting the mic on Jason’s collar.

  Lassiter smiled at Jason. “Great, we will keep a close eye on your young lady.” The intern that had helped with Jason’s mic then took Lily to a chair right on the edge of the set where Jason could still see her.

  The set was a mix of glass with blue and black accents. On one side was the news desk where the anchors stood. Just down from that was the platform where the weatherman stood with a green screen behind him for the maps. In the middle was a long table with several seats that looked more like bar stools. Two of the stools were behind and one in front. The cameras were all angled toward the table so that each speaker could be isolated. Someone was already seated with a large man leaning over him powdering his face in prep for the broadcast. I guess I’m next for the powder job. Jason took his seat and noticed the gentleman sitting next to him must have been fairly short as they had him sitting on an extra cushion. He had a receding hairline with a dark soul patch of hair on his chin. His suit was immaculate and probably cost more then Jason’s car.

  Jason leaned over to shake his hand.

  “Hello. Jason Roy.”

  “Hello, Mr. Roy. I am Henry Geller.”

  “Okay, gentleman,” Lassiter interjected, “we will be on in five minutes.”

  A beautiful woman with dark—almost black—eyes, and light brown hair cut neatly so that it just fell to her shoulders, came toward them.

  “Hello, I’m Jodi.”

  “Pleasure to meet you,” they both said.

  “I was hoping I could just ask a few questions and see how things go. I will try to give each of you equal time to talk, but I certainly don’t want this to be like a formal debate.”

  Geller spoke up first, “I think that sounds fair. We are just having a friendly discussion after all.”

  Jason wasn’t convinced this was friendly. There was something about this Geller guy. He couldn’t put his finger on it. Why had he been in town and available on such short notice? There was no way Jason was going to resolve any of this so he smiled and nodded his head.

  John Lassiter yelled, “All right everyone, we are on in three, two, one…”

  “Welcome everyone,” Jodi began, “to our special news segment on technical advances in Seattle; this is the first segment in a week-long series about the great things we are doing in Seattle. Tonight I am honored to have Dr. Jason Roy from the University of Washington and Mr. Henry Geller from Gibson Labs in Ann Arbor, Michigan. Okay then, first off Dr. Roy. Last time you were here you presented your research on Alzheimer’s and the genes that seem to be related to that. Lately you have become a prominent figure in the battle about genetic testing and the decreasing frequency of genetic disorders. Can you talk about that a little for us?”

  “You are certainly correct, Jodi,” Jason said. “My previous lab showed that the gene for Alzheimer’s was on the 21st chromosome. As many of you know, people born with Down syndrome have an extra copy of that chromosome. This presented us a unique opportunity to evaluate this gene in a population of people who had a normal extra copy of that gene. Through that research we have been able to learn a lot, not only about Alzheimer’s, but about brain function as well. For me that was just the start as I learned that we had a population of people with a unique genetic makeup that would really allow us to uncover the different functions present on an entire chromosome. This could really be the Rosetta Stone for the genome. Before the Rosetta Stone we had all of the symbols for the ancient hieroglyphics but no context to translate them. While we now have the entire content of the genome, and some of its meaning, we certainly are nowhere near being able to read it like a book. I believe we may have the translation right under our noses.”

 
Jodi smiled. “Wow, Dr. Roy, that’s quite a start. What are your thoughts, Mr. Geller? I understand your company has had issues with some of Dr. Roy’s statements, as Gibson Labs has developed many of the prenatal genetic tests being used around the world.”

  Geller smiled just enough that you could see the angles at the corner of his mouth. “First, I want to congratulate Dr. Roy on his research and certainly his lofty goals. What you have laid out for us tonight is frankly amazing. I do have to say that your previous characterizations that our company is propagating selective termination through our tests is a bit shortsighted, and frankly incorrect. Our company has never supported abortion or ever suggested that our tests are anything but information. This information is something that a doctor and a patient have to discuss and make a choice that is correct for them. As you know, the incidence of many of the disorders we test for has diminished considerably in the last decade. We cannot put a number value on life, but the cost of care for people with many of these disorders is more than one billion dollars a year in this country alone. We provide cutting edge technology to families at a price they can afford, so that they can have information to prepare themselves.”

  “Dr. Roy, would you like to respond?”

  Jason took a deep breath and focused. “I think whether your goals are noble or not is something we can debate all day if you want, Mr. Geller. Ultimately, my fear is that we are playing with fire, using a tool before we have full understanding of its implications. By allowing people to select, or deselect as the case may be, for certain genetic traits with our current understanding of the genome is dangerous.”

  Jason could feel the heat rising in his face and knew that this would not play well if he got upset trying to debate with Mr. Geller. “Excuse me,” he said, and took a drink of water before continuing. “Although the incidence for many of the disorders we can test for has declined, the incidence of things we don’t have tests for has risen.”