Trispero Read online

  “What do you mean, it’s okay that Rachel died? How can she be a meaningful expense?”

  “You’re right. I try too hard to be a teacher sometimes. I didn’t mean to trivialize Rachel’s life as a meaningful expense. I can only say that we must get through these difficult portions of the story for its true meaning to become clear.”

  “This story is so hard, Papa. Are you sure I am ready?”

  “Yes dear, I am. Why don’t we take a break and walk for some lunch before I finish? The restaurant we enjoy is a short walk on the beach front along the lake. We should enjoy that today.”

  “I’m hungry, Papa, all of a sudden, just by you saying that. Sounds good to me.”

  The walk to the restaurant was brief, but it afforded Olivay the opportunity to stretch his legs at least a little bit. The front of the restaurant was one of the few buildings that reminded Olivay of the ancient architecture. The building was a re-creation of long times past. The Trispero had chosen certain pieces of architecture that reinforced the feeling of humanity to be maintained. Many of these pieces were simply things that allowed people to enjoy the natural beauty of their world. The restaurant allowed the merger of food, the beach, and enjoying the view. Alucia would be able to see why they had decided to allow this building to stand looking unchanged for eons.

  They walked up a ramp to the main floor where a young woman greeted them and showed them to their seats. Unlike home, where many of the dwellings were underground, this building stood on stilts above the beach. It looked like some rickety structure that would fall into the water if the wind blew. The reality was that it was a recreation made of alloys that could stand up to any natural disaster thrown at it.

  The table was perfect, both because of the view and because it was the same table they always reserved. It was in a secluded corner facing the setting sun over the water, just close enough to have some of the beach in their view. Alucia and Olivay sat across from each other, but at an angle to the table so they could both enjoy the view.

  After sitting, Alucia asked Olivay a question. “What is it that Mother is doing at the station Papa?”

  “Well, she is launching a probe into a far off galaxy using new technology we’ve both been working on.”

  “Oooh, you have to tell me more.”

  “Let’s order lunch first. I think we have another story to finish. First off, what would you like?”

  “I already know. I want the shrimp special. And I already know what you want. The tuna. You always get the tuna.”

  “I suppose you’re correct.”

  The waiter was already waiting for them when Olivay answered. Even though it was a restaurant on the beach, all of the seafood was farmed. Humans still loved real food, but they also could not afford to strip the world. Long ago they’d found a balance that allowed the world to prosper but kept humanity happy with their dietary needs, or more accurately, wants.

  “Alucia, I want to make sure you understand something before we continue.”

  Alucai looked at Olivay with a somewhat confused expression. “Certainly Papa.”

  “Throughout history, many of our greatest leaps in knowledge were often due to a single person, or at the most a very small group. Great intellect would push us over certain bumps in the way of our own evolution. For many generations that is how it went. We existed, we learned, then we got a little push to the next level, going up one step at a time. Until, from the unlikeliest of places, we made our next leap. It wasn’t a single person, but an army of people who were transformed by their wisdom and almost more so by their empathy. For you see, a single person wasn’t able to transform, but an army of people with superior insight who not only could think, but could care and work together for a common goal without concern for who got credit or whose job was most important was transformative.”

  “Were these the Trispero?”

  “You don’t have to prove to me how smart you are. But do you know what Trispero means?”

  “Yes, Spero was an ancient word for hope. You told me that ancient Greek civilizations had a god named Spero, Goddess of Hope.”

  “So what does the Tri mean?”

  “It means three, Papa, but please finish your story now. I’m ready to hear the rest. Besides, our food will take a little bit more time.”

  “To move forward in the story, we need to take a little bit of a jump. To a time when Lily is your age.”

  10

  SEATTLE—2014

  “Hello listeners, it’s a beautiful spring day in Seattle. We will have some clouds later on this afternoon and only a twenty percent chance of rain after four o’clock. Today is April twenty-first. I’m your host, Cal Sethi, and welcome to our show “Science and Technology”. For starters, we have Jason Roy joining us. He is here to talk about DNA and genetic testing. As many of our listeners know, Dr. Roy is researching the genetic makeup of the 21st chromosome and has a daughter with Down syndrome. So, please welcome Dr. Roy.”

  Jason was listening in on the phone in his lab waiting for Cal to give him the invite. “Thanks Cal, glad to be on the show today. As you already alluded to, this is a subject near and dear to my own heart.” Jason paused. He’d lost so much ten years ago, but he had gained his daughter and a new direction for his life.

  Cal wasted no time starting the interview. “Our subject today is a controversial one, as most of us know there are tests out there that mothers-to-be can take that detect many of the common genetic conditions that can affect our children. Can you tell us why you are worried about this?”

  Jason leaned closer to the mic. “The reality is that these tests have become very cheap and can be accurate very early in pregnancy. People can now find out information about their child about the same time they’re learning they’re pregnant. It is partly because of this that a number of pregnancies are being terminated here in the US and even more so in Europe in the last few years.”

  Cal answered, “I just want to clarify something. These are genetic defects that are serious and many of these children will either have serious medical problems or may not even survive. Is this correct, Dr. Roy?”

  “Wow, you’re not going to make it easy on me. There is no question that there are some unfortunate situations where there are severe problems where the child is unlikely to survive or have any quality of life. Genetic testing has been very helpful for things such as cystic fibrosis, Huntington’s chorea, and Tay-Sachs disease which has almost been eliminated in the US. However, there are also some genetic conditions where the child may live a long, happy, productive life, but is less than perfect in some people’s estimation.”

  Cal smiled. “Let me guess. You are referring to Downs syndrome?”

  “When my daughter, Lily was born ten years ago, I learned that one in about 700 children are born with Down syndrome and at that time, there were almost 500,000 people in the US with Down syndrome, also known as DS. Now, less than one in 100,000 births is a child with DS and the national population was almost half at less than 300,000 and decreasing.” Jason felt the temperature in the room rising as his face became flushed and his heart rate picked up. He had to stop himself from dumping too much information and emotion on Cal and his listeners. Coming across more like a crazed father then a scientist was not going to help.

  Cal took Jason’s momentary break to interject, “Dr. Roy, those are some interesting, if not scary numbers, but what do you see as some of the problems with this?”

  “I think one of the real problems is that for families who are trying to have the perfect child, the reality is that for most of the things which affect us, there is no good genetic test, certainly not yet,” Jason said. “You can’t predict if your child will be perfect based on a prenatal test.”

  Jason’s mind began to wander. All of this talk about perfection made him think about Lily. I had no idea what perfection was before Lily, except for Rachel. I knew she was perfect. At least for me.

  “Dr. Roy. Dr. Roy?”

  “Sorry Cal,
can you repeat the question?”

  “It wasn’t really a question, more of a thought. It seems to me that the technology has happened so quickly that our society hasn’t really had a chance to adjust, certainly not legislate guidelines.”

  Jason shook his head as he held the phone receiver. “When has anyone been happy when government has tried to legislate ethics?”

  “That may be true, but we as society need to have some guidelines with new technologies like this. Isn’t that why we’re talking about it?”

  “Thanks, Cal. I agree we have to do something. Guidelines for new technologies is a start, but it’s hard when I get to see how much my daughter has influenced my life to think someone else doesn’t see the value in her.”

  “I know how personal this is for you, but let’s get back to the science. When you were working in San Diego, you helped discover the link between Alzheimer’s and Down syndrome. That leads to my next question. Does this have anything to do with your current research?

  “Lily is the reason I changed the direction of my research and traveled to San Diego when she was a baby. Most of what I do is research the genes in the 21st chromosome, and specifically T cell function.”

  “Sorry, but can you explain to our listeners what T cells are, Dr. Roy?”

  “Sure, Cal. T cells are white blood cells—called lymphocytes—with the “T” standing for thymus, since this was the gland they matured in. T cells are known to help fight infection and thought to play a role in fighting cancers as well.”

  “Aren’t these T cells thought to be causing this new problem everyone is worried about that they are calling CID?”

  “Yes, you are absolutely correct. CID stands for combined immunodeficiency. This latest disease people are calling CID is an unknown, but its progression has been rapid. Immunodeficiency is just like it sounds: a problem with our immune system. The combined means it appears to be more than one single part of our system not working. I don’t know if my research will help, but I do know that T cells are involved in a lot of this. I am hoping that because people with Down syndrome have an exact copy of some of the genes I am studying that they will help us find the key to unlocking ways to help with mental function in Alzheimer’s and fighting disease. I also think cancer treatment is a possibility but I don’t want to get ahead of myself.”

  “Dr. Roy, I can’t say whether or not you are getting ahead of yourself, but treating disease, improving mental function, and curing cancer does sound like a pretty lofty goal.”

  “I know it does sound amazing if not a little crazy, but we are close to discovering some things that may change a lot of lives, for the better.”

  “How do the T cells factor in to all of this? I am familiar with the Alzheimer’s research, but…”

  “To put it simply, T cells are involved with several different aspects of our immune system which includes helping other white blood cells, fighting viruses, and even fending off tumors. If I can locate some of the genes that regulate their function with my research, it will give us clues to help fight some of these disease processes.”

  “Your daughter seems to have sent you down a different path, but certainly one that may benefit us all, maybe even more than you imagined.”

  “I always loved that word, Cal: imagined. I think imagination is the cornerstone to all that we do. I was lucky enough to have someone help me with that. As you know with science, we shall see.”

  “I think on that beautiful note, as the host, I must also say we need to say good-bye for now. Please join us soon, Dr. Roy. I know you have some great things you are working on so I look forward to hearing from you.”

  Jason hung up the phone from the interview and thought to himself. Being a single parent for the last ten years has been the hardest job of my life.

  The clock above his head ticked loudly. It’s three in the afternoon already? Lily has a speech pathology appointment at four. Man, I have to leave the lab in a few minutes to pick Lily up from school.

  Jason checked on his computer. His project since Lily’s birth was researching the genes in the 21st chromosome otherwise known as the genome. The project to determine the genetic makeup of human DNA was started in 1990 as the Human Genome Project. Jason was only separating out the extra chromosome present in Lily and all children with Down syndrome. The terminal he was monitoring was running a software algorithm that had another hour to run according to the clock in the upper right corner. I can’t finish my work until we finish this sequence. Jason knew he needed to leave now if he was going to pick up Lily.

  Jason got up from his chair after securing his computer. Even though the genome project was public domain, there were still many legal battles over patenting specific gene sequences, especially with pharmaceuticals for the drug companies. As he stood, he realized how long he had been sitting in his chair. Hours looking at the computer screen had taken its toll on his neck. One of these days I am going to have to start yoga just so I don’t end up bent like a pretzel. The office was small, with just enough room for his computer and some of his personal stuff. Most of the sequencing machines and labs were on the floor below him. He had chosen this office because it had one window that faced west. If he was going to be in here much of his waking life, he wanted a little sunlight. The other offices were bigger, with more windows, but they all faced east so the mornings were fine. By lunch his office would have been in the dark.

  It was cloudy today, but he could see a hint of the Olympics over the cloud line. It was hard to tell where the clouds stopped and the mountains started, almost giving the impression that the peaks were ships sailing on a sea of clouds. He tried to imagine how Lily would describe it. “Daddy, look at those ships sailing out there! Aren’t they beautiful?” He and Lily couldn’t walk around the block without making twenty stops for “What is this flower? Can I keep this stick? What kind of berry is this?” He was never able to answer all of her questions and he was often brought to the brink of tears because he knew Rachel would have, somehow, known all the right answers.

  Breaking out of his reverie, he grabbed his keys. Despite his precautions against theft, there was minimal security—just a lock on the door and a magnetized badge. There were no vaults or retinal scanners. Most people didn’t even understand what Jason did, let alone want to steal it.

  Jason’s work life may have been boring, but his public life had been building since he had become so vocal about the use of DNA testing. He didn’t grow up knowing anyone with “special needs,” and although he studied some genetics and molecular cell biology he had no practical knowledge. That is, before Lily. Since losing Rachel ten years ago, Jason had learned that what is important in life wasn’t something you could always measure.

  The radio interview had put him in a thoughtful mood as he considered what he wanted to say, but didn’t want to do so on national radio. There were many times throughout history when people thought they understood the special things they wanted to protect. People then enacted rules and policies for the betterment of what they were trying to protect only to find that their understanding was so basic that they had caused more harm than good. This was the case with genetics. Technology had allowed man to map the entire genome, and identify certain genetic traits that could selectively be eliminated. Families who wanted the perfect child would want the test. Insurance companies were told that they could not mandate prenatal screening, but that didn’t prevent them from giving huge discounts to families that did screen. The companies would then reimburse families for the test itself and make certain services applicable to the most commonly diagnosed genetic conditions more expensive or “not covered.” So as these tests multiplied and became cheaper, selective termination became commonplace to many.

  Jason had known almost nothing of this when Lily was born. After her birth he rededicated his life to the study of genetic disorders. His original aim had been to find a cure for Lily so that she could live a “normal” life. As Lily grew, Jason discovered that normal was somet
hing that no one could define, and that his version of normal may not be a good thing. He soon realized that the miracle of “who we are” was much more complex than the color of our eyes or if we spoke without a lisp, and thus, set out to discover what secrets the genome held for making us who we are.

  Jason usually rode his bike to work, but since he needed to take Lily to the speech pathologist, he had driven today. He took the stairs—like he always did—even though it took him through the older wing of his building into the garage. His car was parked in a corner next to a plumbing maintenance section so that nobody could bang his doors. He wasn’t much into luxuries, but it had been his fantasy to own a Shelby Mustang ever since he’d watched Bullitt and Gone in 60 Seconds when he was a child. When he received his grant he also got a generous sign-on bonus. Jason mainly used the car to drive Lily from place to place, and since Lily had watched Gone in 60 Seconds with Jason many times she called the car Eleanor. “Daddy, do we get to take Eleanor today?” Jason hit his remote and started the engine. In the quiet garage it sounded like gunfire, which brought a smile to Jason’s face as he unnecessarily gunned the engine as he put it in reverse.

  As he pulled out of the garage he surveyed the crowds. It was still a little overcast, and it appeared that the last classes of the day at the university were letting out. A sea of students flooded across the crosswalk. It was cool enough that most of them were wearing pants and light jackets. The sight of them brought back memories of his days as a student. Especially before he decided he wanted to be a scientist.

  As expected, it took longer to get off campus than any part of the rest of his trip. It wasn’t rush hour, but traffic to get on to the Montlake Bridge could be terrible. Seattle was a town defined by its waterways and the only way to get to Capitol Hill from the university without backtracking a few miles was over the Montlake Bridge. It was a remnant of the early 1900s, made of cement and metal with long cables that stretched over its span for the buses.