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Authors: Mark Atkisson,David Kay

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CHAPTER 47

 

 

Katie arrived back at her
office and checked her email. The results of the Center’s blood tests were in.
There were seventy five samples. She entered the data in her computer and ran
her program. About thirty minutes later the results were displayed. Fifty-three
positives and twenty-two negatives. To be honest, she had expected to see more
negative results. She started to match the names with the results based on the
batch list provided by Patti. As she went down the list, she quickly realized
that she didn’t know who had what disability at the Center. She assumed that
these were all of the students with Down syndrome.

She continued down the list and then stopped dead
in her tracks. There it was, plain as day, Marge’s name correlated with one of
the samples that was negative. Katie immediately assumed that Patti had
transcribed the name incorrectly when she put the lists of names and sample
numbers in an email. She picked up the phone and called Patti.

“Hi Patti, this is Katie. I want to thank you for
going by the Center yesterday and taking all of the blood samples and then
starting the testing. It is a great help,” said Katie.

“Don’t mention it,” said Patti. “It was a pleasure
working with the kids yesterday. What can I do for you?”

“I just need you to check one name on a sample. I
got a result I didn’t expect and I just want to verify the information.”

“Sure, no problem. Let me grab the rack of test
tubes I used for the samples. What number do you have?”

“20101,” said Katie.

“That will be easy,” said Patti. “It was the first
sample I drew. I can tell you the name without looking, but let me double check
to make sure there wasn’t a mix up.”

A few seconds went by and then Patti said, “Yes,
just as I thought. That was the sample for Marjorie Kline. I think she goes by
Marge. I even have her signature on the side of the test tube we used.”

“Could you have written the batch incorrectly when
you did the testing?” asked Katie.

“It is highly unlikely, since I do them one at a
time and in order. I double check the number in the analyzer against the number
on the tube before I run the test too.”

“Ok, thank you for the information,” said Katie,
now quite puzzled.

This didn’t make any sense to Katie. She now
wondered if any of the other negatives could be children with disabilities
other than Down syndrome.

Katie finished typing up the list of names of
those with negative results and emailed them to Rob at his office. Next, she
called Rob to let him know the news about Marge.

“Hi sweetie. I just emailed you the list of names
of the students and staff who were negative. I got a surprising result.
According to the test, Marge is negative. I think we need to retest her. Could
you take a close look at the list to verify that everyone else on the list has
Down syndrome?” asked Katie.

“Sure,” said Rob. “Just give me a second”

Rob went down the list making a check mark next to
the name of each person with Down syndrome. When he finished all the names had
a check with the exception of Marge.

“Yes, they all have Down syndrome, except Marge”
said Rob. “When do you think you will be finished analyzing the rest of the
results?”

Katie, sounding a little surprised, asked “What do
you mean? These are all of the results. The rest of the seventy five were
positive for SDX.”

Rob said, “Are you sure? There are at least
fifteen more students that were tested that have Down syndrome that don’t show
up on your list.”

“There must have been a problem with the testing,”
said Katie. “I already called Patti about Marge’s test, I hope she doesn’t get irritated
with me questioning her.”

“There must be some explanation,” said Rob.

“Yeah, but I don’t know what it is at this point.
Thanks for helping me with this. I’ll be home on time this evening. We’re still
heading to our parents’ house this weekend, right?” asked Katie.

“Yes. It is supposed to be a great weekend. I
better let you get back to work. Love you, bye,” said Rob.

Katie hung up and then dialed Patti again.

“Hi Patti, sorry to bother you again, but I am not
getting the results I expected from the blood samples. Is it possible that
there could have been a problem with some of the tests or that they could have
been mixed up with other samples.”

“I doubt it,” said Patti. “I calibrated the
analyzer before I ran each batch and there were no other blood samples in the
lab at the time. I still have enough blood left in the test tubes to re-run the
tests if you like. Do you want me to run them all or just a select few?” asked
Patti.

“Let me send you a list of the ones I would like
you to rerun if that is ok. I will email it to you in a few minutes,” said
Katie.

Katie went through her results and picked out all
of the positive tests and Marge’s negative test and then emailed the list of
names and blood sample numbers to Patti.

Katie looked at the clock on her wall and it was
already one-thirty. She picked up the phone and called Sarah. “Hi Sarah, do you
have time for a quick briefing before the DVC today?”

“Give me a few minutes and then come on up. I am
working on a briefing paper for some information the Secretary wants posted on
our website.”

“Ok, I will be up in about ten minutes,” said
Katie.

“That should work.” 

Ten minutes later Katie went up to Sarah’s office
and knocked on her door.

“Come in,” Sarah shouted. “Katie, good, it is you.
Read this and tell me if I made and errors on what you reported last week.” 
Sarah had cut and pasted information from one of Katie’s emails.

“It looks accurate. What is this for?” asked
Katie.

“It looks like someone leaked some information to
a Washington Post reporter. A story was posted on the internet about 20 minutes
ago that reported that there were a group of blood tests that were used to
prove the presence of SDX in someone’s body. Pretty harmless information, but
we wanted to get ahead of the story, so the Secretary wants to post the names
of the tests and their normal ranges and SDX levels so that other scientists
have this information to further their research,” said Sarah. “So, it looks
right?”

“Yes, the tests and the values you’ve quoted are
accurate.”

Sarah clicked the send button on her computer and
the email disappeared.

“So what do you have for me?”

“Two things,” said Katie. Katie pulled the life
expectancy table from a portfolio and handed it to Sarah. “This is my first
iteration which is based on only two weeks of data. I expect it will change and
become more refined as time goes on. But for now, it is all we have.”

Sarah looked at the table and went immediately to
her age. She was 53 years old. “So according to your table, if I am of average
health I can expect to be dead on or about January 5, 2016. Is that what this
is telling me?”

“Yes, I am afraid so.”

“Well, hopefully when you refine the data, that
date will move to the right. Did you do any calculation as to when we need to
find a cure?  Of course, for me it needs to be before the New Year,” she
sighed.

“I made the assumption that a bright 20-year-old
could possible find a cure. Based on that, we have until the end of May to save
the human race as we know it” said Katie.

Sarah looked almost defeated for a brief moment,
then she pulled herself together. “You said you had two items to discuss. What
other good news do you have?” There was a hint of sarcasm in her voice, and a
slight smile played around her lips.

“I received the test results from the Center and
they are mixed. Not all of the samples from Down syndrome subjects were
negative. In addition, one of the staff who doesn’t have any disability was
negative. I have asked the lab to retest the blood to make sure none of the
samples got mixed up. I should have some of the results later today,” said
Katie.

“I knew it couldn’t be as simple as we thought.”
She paused and then said, “You know, assuming the original tests are accurate,
I want one of our disability specialists to go and examine the test subjects
this afternoon. What time do the staff and students leave today?”

“About 6 p.m.,” said Katie.

Sarah picked up the phone, issued the order and a
doctor was on the way ten minutes later.

The DVC occurred as scheduled. There were sober
faces all around the table when Katie shared her life expectancy table with the
group. The mixed results for the Center’s blood samples were discounted by most
of the group.

At the end of the DVC the Secretary spoke. “I
don’t know who released additional information from our research to the press,
but remember, any contact with the press should be coordinated through my
office. The information that was printed in the press today was being prepared
for release. All this did was force our hand, which resulted in a hastily prepared
document posted on the CDC site. If you suspect anyone of this, please reaffirm
with them the need to work through my office. I plan on releasing all the data
that will help guide researchers in their quest for a cure. I am not ready to
release the life expectancy table that Katie shared with us today. I will have
to discuss this with the President. It could have some grave consequences on
our National Security. I presume the only people that know of this work are on
this call. Please keep your silence on this issue. With regards to the negative
blood results, as soon as we have definitive information on the negative
samples, I plan on making a press release, so the rest of the world will know
what to look for. Any questions?” said the Secretary.

Everyone remained quiet.

“Ok, that is all for today,” said the Secretary.
“Katie, thank you for your great work.”

 

CHAPTER 48

 

 

In a small village in
northern Scotland, Alastair McGregor was watching the evening news on his small
television while eating his dinner. This was his main contact with the outside
world since his retirement five years earlier from the British Ministry of
Health at age 75. Alastair had been the Chief Veterinary Scientist in charge of
the search for the cause of and cure for bovine spongiform encephalopathy, more
commonly known as Mad Cow disease.

He was listening to the latest reports on the
global epidemic. He felt pretty safe where he was. He seldom went out and only
had contact with a few of his friends, on an infrequent basis, at the local
pub. He did of course, keep up to date on the research his younger associates
continued to pursue on Mad Cow disease by way of email. He had heard that the
medical community was focused on a genetic solution at this point.

The anchorman had just finished the report by
mentioning that the disease was indirectly detectable by six different blood
tests, the names of which were available on their website. Interested to find
out what tests they were, Alastair when to the TV station’s site and clicked on
the link, “Epidemic.”

He read through the list of tests and they seemed
vaguely familiar to him, although he wasn’t quite as sharp as he used to be. He
went to his bookcase and pulled down one of his files containing some of his original
research. Paging through the documents was like taking a stroll down memory
lane. His notes were the only existing records of the scientific research done
in the early days of the Mad Cow scare, since the other documents and copies
had been destroyed due to a fire in the records section of the Ministry of
Health building in 2012.

As he flipped through the papers, he came to the
section that contained the blood work they had examined. Reading the original
lab reports, he started to get excited. Their research had shown a similar
spike in abnormal blood tests in the cows. He had wanted to start a testing
program, but pressured to find the cause, he and his colleagues had discounted
it as unreliable, since the gestation period of the disease was up to eight
years long. He remembered that the decision was made to slaughter over 4.4
million cattle just because they couldn’t “take a chance.” He had argued
against this, but in the end he was overruled.

He went back to the TV station’s website to see if
there were any common tests that were abnormal. One by one, every test on his
screen was identified in his research work from 1992. In his humble opinion,
the epidemic was likely a result of something similar to Mad Cow disease, a
prion protein gene mutation, for which there was no cure. He and his staff had
been looking for a cure for almost thirty years now, but with no success. He
knew now that anyone infected would die.

Alastair, now excited about his discovery, had to
tell someone. He would send his hypothesis to his colleagues at the Ministry of
Health and ask them to pass it on. Wanting to make a foolproof argument, he
took his time compiling all the facts associated with his conclusion. As he was
completing his final proof of the document, he started to feel a bit
light-headed. He got up to go to his kitchen to get something to eat. About
halfway across the room he collapsed, never to rise again.

 

It was late afternoon and Katie needed to know how
Patti was doing with the tests. “Hi Patti, are any of the retests complete
yet?” she asked.

“I have about half of them finished. Do you want
me to send you the results?”

“Yes. That would be great so I can start analyzing
them. Did you redo Marge’s yet?”

“You kidding me,” said Patti. “It was the first
one I did. I will email you the results in about ten minutes.”

Katie waited for what seemed to be an eternity --
in the end it was only seven minutes -- until the email from Patti popped up.
She entered the data and started the process. While it was running she looked
at Marge’s results. Based on her cursory review, it looked like she would be
negative again. Surely this was impossible, she thought.

The results were complete in less than fifteen
minutes. Nothing had changed. They were all still positive, except for Marge.
She would have to wait for the rest of the samples to be sure, but now she
expected them to be unchanged. She was confused by what she was seeing and
wished Ben was available to take a look at the data. He might have an
explanation.

Katie had provided the initial test results over
the phone to the disability specialist who was at the Center examining the
staff and students. She wondered if he had discovered anything, and decided to
give Rob a call to see how the doctor was getting on.

“Hi Rob,” said Katie. “Did the doctor get there
ok?”

“Yes. In fact, he left about thirty minutes ago.
After about ten minutes here, he knew what he was looking for and didn’t take
more than five minutes with each person. He seemed pretty excited about what he
found, but he didn’t share anything with us.”

“The retests are complete, but only about half of
your Down syndrome students and staff are negative for the disease. I expected
them all to be negative. Marge is also confirmed negative. It just doesn’t make
sense,” said Katie. “We may have to segregate the groups at some stage, but I’m
not sure yet.”

“Well, I have confidence you’ll figure it out.
Sounds like a problem with the tests to me,” said Rob.

“That’s what I thought, but I am trying to rule
that out. I’m afraid I am going to be late tonight.” 

“That’s alright. You can sleep in the car on the
way to our parent’s house tomorrow.”

Katie hung up and called Sarah. “Hi Sarah. Have
you heard from the doctor yet?”

“Yes. He is on his way back and expects to be here
in about twenty  minutes. He is coming straight to my conference room to give
me a debrief. He said he has some interesting information. Do you want to join
us?”

“I wouldn’t miss it for the world. I’ll be up in
about 15 minutes,” said Katie. Maybe there would be some answers in what the
specialist found. She could only hope.

Katie and Sarah were sitting in Sarah’s conference
room when the doctor arrived. Katie had just briefed Sarah regarding the
results of the resampled blood. No change.

“Hi Sarah,” said Dr. Dewitt Clinton.

“Let me introduce you to Dr. Katie McMann. Her
husband runs the Center you visited and she is the one who developed the test
to identify carriers of SDX,” said Sarah.

“It’s so nice to finally meet you Dr. McMann. I
just read about your work and I am very impressed with how you have woven
everything together to develop your theory. You know, you’re becoming a bit
famous in our medical circles of mere mortals.  By the way, your husband is
running a magnificent facility. I don’t know why I didn’t visit it in the past.
I told him I would stop by in the next several weeks to look at his programs to
see where we can make some improvements.”

“Thank you very much, Dr. Clinton,” replied Katie.

“Please call me Dee,” said Dr. Clinton.

“Well what have you found Dee?” asked Sarah.

“A most extraordinary thing,” he began. “As you
may know, about 50% of persons with Down syndrome have a lateral palmer crease,
also known as a Simian crease, named after our evolutionary ancestor, the ape.
The LPC, is also found in about 10% of the population on one or the other
hand.”

“I wasn’t aware of that. I do know my daughter
Hope has an LPC on both of her hands,” said Katie.

“Well, everyone at the Center that was negative
had an LPC on both of their hands, including Marjorie. Those with Down syndrome
that don’t have the LPC were all positive on your test sheet. Of course I
didn’t share the test results with anyone.”

“So, what you are saying is that LPC combined with
Down syndrome causes immunity to SDX,” said Sarah. 

“That is how is seems. Of course, it is very
likely that other slight genetic variations make a difference too, but there is
one wildcard: Marjorie doesn’t have Down syndrome. I questioned her carefully
about her past and what I found was interesting up to a point; but she doesn’t
know who her birth parents are. She was adopted at birth and both of her
parents are deceased, and she was unable to obtain a record of her birth
parents when she tried about 20 years ago,” explained Dee.

“So what is our conclusion Dee?” asked Sarah.

“I think whatever is causing SDX doesn’t affect
this small group because of their pre-existing genetic defects. I believe the
pathogen must be mutating the genes in people who don’t have these pre-existing
‘immunities’,” said Dee.

“Wow”, said Katie. “That’s a mindful. So what do
we do about Marge?”

“You know her well, correct?” asked Dee, nodding
at Katie. “You need to let her know that she is negative and tell her what my
theory is. Maybe there is someone that knows who her birth parents were, maybe
an older relative, or an old friend of the family,” said Dee. “The other option
is to look for her adoption papers, but that may prove difficult.”

“Ok, I will get the ball rolling,” said Katie.

Back in her office Katie called Rob on his cell
phone.

“Hi honey. I need a favor from you,” she said.

Katie explained the situation and left Rob to
finesse the solution. About 15 minutes later Rob called back.

“As luck would have it, she has been having dinner
every night for the last week with an old family friend who lost her husband at
the beginning of the epidemic. She is 75, which would have made her 23 when
Marge was born. She went to high school with Marge’s parents.”

“Does Marge know to call you if she gets any
information?”

“Yes, she will call immediately if her friend
knows anything,” said Rob.

“I am just about done here. I have to send a few
emails, stop by Sarah’s office and then I will be on my way home. I should be
home by 7:30 p.m.”

“Sounds good,” replied Rob. “How about I barbeque
some steaks on the grill this evening? I have a lot of plans I want to share
with you.”

“You’ve got deal,” said Katie.

Katie sent an email to Ben summarizing the day’s
discoveries and then turned off her computer. A few minutes later she briefed
Sarah on her plans for the weekend.

“Call me when you hear from Marge, would you?”
Sarah asked.

“You’ll be the first to know.”

“And have a great weekend on the farm. I am
envious. I wish my family was closer,” said Sarah.

 

About 8:30 p.m. Rob received a call from Marge.
Her voice was a little shaky as she told him what her friend, Melba, had said.
She had known both of my birth parents. They were in their early twenties and
they both had Down syndrome. When my biological mother became pregnant, they
wanted very much to go through with the pregnancy for reasons of faith. My
adoptive parents had decided to adopt me even though they knew that I would
also have Down syndrome. Everyone was surprised when I was born with no
apparent disability. My adoptive parents never told me because they didn’t want
me to carry that stigma with me throughout my life,” said Marge, now slightly
sobbing on the phone.  She had always known her parents were special, just not
how special they really were until now.

They finished their conversation and hung up. Rob
looked at Katie and she could see the tears welling up in Rob’s eyes. It took
everything he had to hold back his emotions.

They finished dinner and the kids went inside to
pack for the trip tomorrow morning. Katie and Rob walked hand in hand along the
Patuxent River as they went over the information they had received from Marge.
It was all now starting to make sense.

When they reached the house, Katie made a call to
Sarah and then shot off a short email to Ben with this latest update.
Everything was starting to come together, but Katie wasn’t sure she was going
to like all of the answers they were getting.

 

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