Environmentally Influenced Genetic Diseases
Sickle Cell: The Forgotten Disease Video
Narrator
What are some negative things that can be passed down genetically?
Girl
Turner’s syndrome, Diabetes
Boy
Color Blindness
Boy 2
Hemophilia or sickle cell anemia
Girl 2
I am lactose intolerant
Boy 3
My father has a balance problem and so occasionally I will lose my balance a
little.
Boy 4
Big nose big ears
Girl 3
From my father’s side of the family which is English I got horrible teeth
Boy 5
Balding I think I have taken care of that though
Boy 6
I have two different colored eyes, so I got one from my mom and one from my
dad.
Sickle Cell: The forgotten Disease
Narrator
Infinity Duncan looks as happy as any other four year old, but her playful nature
and seeming less boundless energy are deceiving.
Infinity Duncan
Look momma I am spinning
Stephanie Duncan
The reality is that even though she seems healthy and she looks healthy and can
do things that any other child can do. She just isn’t like any other little kid as far
as health is concerned.
Narrator
What makes Infinity so different is that at the age of four she has already
experienced many health problems that strike adults. What is making her so ill is
Sickle Cell Disease. It is a genetic disorder that destroys her red blood cells to
carry oxygen throughout her body.
Stephanie
I am really scared but at the same time I am trying to keep faith. I pray a lot it
gets hard.
Tionne Watkins
I was sick when I was born, when I came out they didn’t know what was wrong
with me.
Narrator
Thirty year old Tionne Watkins has sickle cell disease too. Most of the world
knows Tionne as Tboz, the lead vocalist for the band TLC. Even though her
sickle cell can be debilitating she said she refuses to let it slow her down.
Tionne
Yes I get sick but I do not let it take over me. I try to stay positive in the hospital, I
don’t try to stay there I try to get out.
Narrator
For so long it seemed as if little could be done to stop the ravages of sickle cell
disease. For too long very few in the medical community got involved in the fight.
Today there is new promise for those battling this disease. From a rock star like
Tboz to a little girl like Infinity Duncan, there is hope that they will win their battle
against sickle cell. Stephanie and her daughter Infinity are arriving at Fairview
hospital in Minneapolis Minnesota; it is a painfully familiar routine. At age four,
Infinity has already suffered three strokes, dozens of times over the last two
years she has been rushed here for medications transfusions and other
treatments that help ease the effects of sickle cell disease. This trip promises to
be different. Stephanie and Infinity will spend the next few weeks in this hospital
as part of something much bigger then themselves. They are here to help
doctors find a long term treatments perhaps even a cure for a disease that
affects people of every race around the world.
Who is affected by Sickle Cell Disease?
Narrator
Sickle Cell is most common in west and central Africa where as many as twenty
five percent of the people have the Sickle Cell trait and one to two percent of
babies are born with a form of the disease. In the United States with an
estimated population of about two hundred million, about one thousand babies
are born with sickle cell disease each year. Another two million African
Americans have the sickle cell trait. They are not sick because they carry only on
copy of the gene that causes the disease. To get the disease the person has to
have two copies of the defected gene. The odd that two people with a sickle cell
trait will have a child with a full blown disease is twenty five percent. Doctors
discovered that Infinity had sickle cell disease a few hours after she was born.
The problem showed up in a blood test routinely given to most newborns in this
country.
How does Sickle Cell disease affect people who suffer from it?
Narrator
Sickle Cell is a genetic disorder that interferes with the body’s ability to produce
red blood cells in the bone marrow. These red blood cells that give life saving
oxygen to organs and tissues, begin to change shape. Normally red blood cells
are soft and round so they can easily squeeze through tiny blood vessels, but in
people with sickle cell disease the red blood cells become stiff and pointed so
they clog blood vessels. When this happens vital supplies of oxygen are cut off
permanently damaging nearby tissues and causing intense debilitating pain. This
is known as Sickle cell pain crisis and it can strike children and adults. Tionne
Tboz Watkins may be a superstar rock singer but she is also a normal sickle cell
patient, when she goes into sickle cell crisis everything in her world stops.
Tionne
I have had really bad ones, legs hurt can’t walk, arms hurt can’t use them, you
can’t feed yourself or help yourself to the bathroom you can’t wash yourself, you
are handicap.
Narrator
Almost anything can trigger a sickle cell crisis, stress fatigue becoming too hot or
too cold change in seasons or a common infection such as the flu. Growing up a
doctor told Tionne what she could expect would send her into crisis.
Tionne
It could be one hundred and ten degrees outside, but when I go into a cold
swimming pool I go into crisis. He was right about when I catch a cold I get a
crisis, when somebody punches me I go into a crisis. I take precaution like when
people have colds I wear a mask sometimes. Some people may get offended but
that is how I live my life. I have to do stuff like that so that I do not get sick. It isn’t
normal in someone else’s house but it is normal in mine.
Doctor Lakshmanan
Sickle cell disease affects every organ and tissue in the body.
Krishnamurti, MD
Narrator
Doctor Lakshmanan Krishnamurti, at the University of Minnesota is one of the
country’s foremost experts on Sickle Cell disease
Doctor Lakshmanan
the first organ to be affected is the spleen it affects various parts of the brain
Krishnamurti you can have a stroke and it eventually affect the liver and kidneys
Narrator
For the last five years doctor Krishnamurti and his colleagues have been
searching for a cure. Infinity Duncan is one of his patients
Doctor Lakshmanan
Last year she was admitted with a fever and then we noticed she wasn’t moving
her left leg it then became obvious she had a stroke on the left side of her body.
Hospital Employee
I have to inject contrast in five minutes. There is a lot of fluid buildup in this area.
[Showing a brain scan]
Stephanie
She lost movement in her left leg for a week but because she is so young her
body was able to recover. It isn’t a full recovery but to the eyes of people who are
not medically knowledgeable it looks like a full recovery.
Narrator
Look at this magnetic imaging scan of Infinity’s brain the dark regions show
where the brain has cause permanent damage. Infinity is not alone; her doctor
says that everyone with this disease suffers lasting damage. Tion Watkins has
never had a stroke but sickle cell has affected her personal and professional life.
Tionne
I found that touring is very hard on me. It is easier if I do a day here and a couple
days off. If I want to sing then I have to take care of myself or singing won’t be
here. So if I really want something in life my health comes first. One thing that her
and her husband Dion really wanted was a baby. Before we decided to our baby
I talked to our hematologist first, he talked to a couple of people and he thought
that I could do it. I knew I could I just wanted to make sure. I felt in my heart I
could and I did successfully, she is so healthy it is ridiculous.
Narrator
Tion does not allow picture of her daughter Trace, who carries the sickle cell trait
but is very healthy.
Tionne
Being that I have the disease she has the trait. She won’t be sickly as I am but if
she were to get with a mate and have a child her child could have the full blown
disease. Knowing that I am aware I can wizen my daughter up so that her family
will be ok.
Narrator
Such home grown advice was not available to Stephanie and her husband. It
never occurred to them to have genetic counseling before they had a baby
Stephanie I know I have the trait and all I know about that is when you have
the trait you are anemic. So I didn’t really have detailed information on it.
Interviewer
Infinity’s father didn’t know he had the trait or he hadn’t been tested?
Stephanie
We never talked about it actually, I think he knew but it was a miscommunication
where nobody ever spoke about it so it wasn’t discussed.
Tionne
You need to be aware of who you are and how your body works, especially if you
are going to bring a child into this world. If you don’t know yourself you don’t
know what you can pass on to him or her.
Narrator
Tion Watkins has learned to live with her disease. Stephanie and infinity are just
beginning.
Stephanie
I do everything in my power to make sure she has a child hood. I want her to stay
a child but this has pushed her to grow up a little faster. It makes her think about
things that I don’t think she should have to worry or think about. Like her health,
she should not have to worry about her health at four.
Narrator
So Stephanie Duncan is trying to give Infinity back her child hood trying to give
her back her health. This is why they made this trip to the hospital it is their first
crucial fight against this disease that is difficult to treat and impossible to cure. In
addition to African Americans four thousand three hundred Hispanic and two
thousand six hundred whit Americans are born with Sickle Cell trait each year.
Stephanie and Infinity battle Sickle Cell disease every day. They live near
Fairview hospital in Minneapolis one of only fifteen hospitals in the United States
that is conducting advanced research into this disease.
Why is it difficult for doctors to find a cure for Sickle Cells disease?
Doctor Lakshmanan
Genetic diseases do not have any quick fixes. You can’t make any environmental
changes, like you can with say obesity or cigarette smoking there is not just one
pill that you can take and be free of the illness.
Doctor John Wagner
I think one of the reasons it is such a difficult disease is because it is really
unpredictable
Narrator
Doctor John Wagner is head of gene therapy at Fairview hospital and part of the
team treating infinity.
Doctor John Wagner
Some people who have the exact same mutation and the same part of the
disease have no problems what so ever. Of course there is no way of predicting
who is going to be the good and bad patients upfront, you only know after the
fact. So therefore it makes It much more difficult to design a therapy that works
for everyone when you don’t know who needs it.
Social Challenges
Narrator
Science is not the only challenge when it comes to fighting Sickle Cell Disease.
There are social and political challenges at well. Cystic Fibrosis which only
affects half as many people as Sickle cell receives more than twice as much
money for research from the federal government. This disparity does not surprise
a former Surgeon General Doctor David Satcher. He said Sickle Cell has never
had many champions.
Doctor David Satcher
Some diseases are because of the people they affect and the lobbying behind
them have gotten more funding than others. We in this country have not yet
developed a health system that meets the needs of our people and our health
system leaves to many gaps wide gaps in what is available to people.
Narrator
In nineteen eighty eight, cancer researchers discovered almost by accident a
powerful weapon they could use against Sickle Cell disease. It is called
Hydroxyurea, it is not a cure but it has helped many patients reduce the severity
and frequency of their pain crisis. At the national institute of health Doctor Griffin
Rogers was the first to discover the benefits of this drug.
Doctor Griffin Rogers
The patients will generally tell you that they feel better that their energy levels
have improved and when you follow them in the long term basis the number of
crisis they are having in much less then what it was before they were on the
drug.
Narrator
Since the early nineteen fifties doctors has been struggling to find an effective
treatment for sickle cell disease. They made little progress till researchers
discovered something very interesting about children who inherit it. Most are
pain free for the first six months of life. But why?
Doctor Griffin Rogers
They have something in their hemoglobin called Fetal Hemoglobin, which is the
predominant hemoglobin that is made in the fetal life. In the second and third
trimester of life the Fetal Hemoglobin is produced. Now, generally the fetal
hemoglobin gets turned off at about six to nine months of life and at that point the
sickle hemoglobin becomes the dominant form. This is why the infants start
having symptoms at that point. For me the question was can one safely use a
drug to reactivate fetal hemoglobin to treat the patients with the severe varieties
of sickle cell disease.
Experiments
Narrator
As part of a controlled experiment Doctor Rogers started giving controlled
subjects Hydroxyurea to patients, their fetal hemoglobin levels began to rise.
Doctor Rogers
I guess that was a eureka point this is what we thought might happen and it is
very gratifying that it did follow through in that regard and that overtime the drug
has now become approved by the Food and Drug Administration for the
treatment of these patients.
Narrator
Not all sickle cell patients can take Hydroxyurea, side effects including nausea
and an increased risk of infection make this drug difficult for some patients to
tolerate. Doctors told Tboz not to take it while she was pregnant because
Hydroxyurea can cause birth defects. It is not yet recommended for children like
Infinity Duncan because doctors worry about long term risk. So when Infinity
becomes sick with sickle cell there is little doctors can do.
Stephanie
It is very difficult to watch her get sick or lose her appetite or run a fever it is
really hard.
Narrator
For the last eighteen months the only treatment for Infinity has been monthly
transfusions and blood exchanges. Doctors hope to decrease her strokes by
diluting the number of sickle shaped red blood cells
Stephanie
She understands it as sick blood and that is how I explain the exchanges to her.
That we are coming in and they are going to take out some of the sick blood and
put healthy blood in.
Narrator
Transfusions and blood exchanges over a long period of time also carry risk. Iron
from transfused blood can become toxic after it builds up inside the body.
Doctors have told Stephanie Duncan that they cannot transfuse Infinity forever.
Stephanie
Sometimes I do get upset, not with her but with the fact she had to go through it.
Thinking of a billion other things she could be doing and it starts becoming
frustrating even though I know she needs it I don’t want her to have to go through
it.
Narrator
Coping became more difficult for Infinity too, all the trips to the hospital, the
needles, the transfusions, and the pain.
Stephanie
I look at her and she has so much strength and so much fight in her and she
wants more than anything to go play and do everything that every other kid can
do.
Narrator
For Infinity Duncan a chance at that normal life is about to begin. Doctors at
Fairview hospital have discovered that Infinity is a candidate for and experimental
bone marrow transplant. They plan to replace her disease bone marrow with new
marrow which they hope will produce normal red blood cells. Red blood cells like
most blood cells are produced inside the body’s bone marrow.
Doctor Lakshmanan
This can fundamentally rewrite how we treat sickle cell disease and that is the
most exciting and dramatic aspect of what we are doing here.
Bone Marrow Transplants
Narrator
Bone marrow transplants have become somewhat common for patients with
advanced Leukemia and other cancers. Transplants that doctor’s purpose for
Infinity will be different than conventional transplants in two ways, first doctors will
use lower doses of chemo therapy to destroy her diseased bone marrow the
dose given in traditional transplants is to toxic for sickle cell patients.
Doctor Lakshmanan
We are able to reduce toxicity and prove the transplant works we will be able to
offer it as we do not in those clinical trials to patients where a transplant was not
an option.
Narrator
The second difference involves the bone marrow cells that will be used in a
transplant; they are not an exact genetic match. Because infinity has no other
brothers and sisters Infinity’s cells will come from an unrelated donor.
Doctor Wagner
Infinity Duncan is actually unique in that she is going to be one of the first
unrelated donor transplants performed for Sickle cell disease. As you can image
the work that has been done with great success involved bone marrow transplant
has been done using your brother or sister. However, we are going now into a
more unknown, will this therapy will this new approach to treating patients work if
you use an unrelated donor? We don’t know the answer.
Stephanie
They told me that they would give us time to think about if we want to do this.
There was no thinking about it and I still ask myself if it was the right decision, but
I don’t see a change in my answer.
Narrator
The decision to go forward is made and four year old Infinity Duncan is about to
become a medical pioneer.
New Studies
Doctor Wagner
When I design a new study like this it is all very easy at first all very objective.
Then you have this first patient that happens to be this adorable little girl and you
think about have I made a mistake have I done the right thing have I thought it all
through you really are just second guessing.
Stephanie
As I was watching her go down the hall I was just thinking about everything she
will be going through. I was looking at how she was healthy and fine before she
came in and I started thinking about how she was going to be getting sick. I was
trying to hold her hand and when they started speeding up her hand started
slipping away from mine and I felt like I slipped away from her. It just really
scared me and there were a whole bunch of mixed feeling and emotions about
what happened and what is going to happen.
Narrator
Day two, Infinity starts receiving low dose chemotherapy and small amounts of
radiation to destroy her diseased bone marrow and prepare her body for the
transplant.
Doctor Lakshmanan
We hope that this will cure her disease, but we do not know that yet. This is the
best way to know if this is going to be the right way to go for us.
Narrator
Doctors do know that this experiment has risk. Infinity could develop seizures,
infection or a potentially fatal condition called Graph versus Host disease. That is
where the transplanted cells actually attack and start destroying infinity’s own
organs and tissue. To avoid the risk of this happening doctors will use a new
source of cells from the transplant. Infinity diseased red blood cells will be
replaced with healthy cells from the umbilical cord of a new born baby, umbilical
cord blood that is usually discarded after birth.
Doctor Wagner
Umbilical cord blood has an immune system that is much more forgiving. It is still
possible that we will find complications in Infinity Duncan and other patients
receiving core blood but it is reduced compared to using bone marrow.
Stephanie
I just always ask her, do you want to do this? I don’t think she really knows in
debt what is going on, but she knows a bottom line is a cure.
Narrator
As the days of radiation and chemo drag on both the Duncan’s and their doctors
remain optimistic, even though only a few dozen children in this country have
ever been cured of sickle cell disease using bone marrow transplants. One of
those children is nine year old Nina Herrera. She has battled sickle cell disease
all of her life Like infinity her disease got progressively worse until she too had a
stroke.
Nina
Nina’s Dad
One morning we woke up and she couldn’t grab her bible. This is when she was
five years old. We rushed her to the hospital and she had suffered a major stroke
which paralyzed the left side of her body.
Iris Herrera
I was devastated and it was very hard to accept. I knew nothing about the
disease I didn’t know what it could cause or what she would was going to suffer, I
knew nothing about it.
Nina’s Dad
It was a very traumatic time for us.
Narrator
With few options and diminishing hope that their daughter would ever have a
normal life, the doctors told them about the transplant research being developed
at the Fairview hospital, the same hospital where infinity is now being treated.
For weeks the Herrera’s said they agonized over the risk and rewards of the
experimental procedure.
Nina’s Dad
They have never tried it before so there were risks involved in this. We were
taking the possibility of taking Nina out there and losing her. However, it wasn’t
much of a choice because Nina really had no quality in her life. We had to take a
chance.
Iris
You know it is a decision that you have to make when you have your child’s life in
your hands. It is a decision that you are making for her, it is her life and you don’t
know how it is going to turn out.
Narrator
Despite the uncertainty the Herrera’s decided to take a chance. To save their
daughter they decided to give up everything. They gave up their jobs and house
in Buffalo New York and traveled one thousand miles to Minneapolis Minnesota
where Nina would become the first person to receive an experimental transplant.
Nina’s Dad
That was probably the biggest day of our lives. We knew what was going to
happen that day, but we didn’t know what the results were going to be. We were
there and there was no turning back.
Narrator
For three long months the Herrera’s waited, in the end there was good news. The
transplant worked Nina’s diseased bone marrow had been replaced with healthy
marrow that now produces normal red blood cells. Nina is Sickle Cell Free.
Nina’s Dad
Nina is off of all her medications with the exception of penicillin and she is not
receiving any more blood transfusions or anymore crisis. There is quality back in
her life.
Narrator
If it can happen for Nina could it happen for Infinity? Today is the day that
everyone has been waiting for. Infinity is about to receive her transplant. It is a
day that could change her life forever. It is a day that can offer hope for millions
who also suffer from Sickle cell disease.
Stephanie
I am hoping that she will be ok and healthy and that the new cells are going to
come in and take over it, sickle cell will be gone.
Narrator
It will take less than thirty minutes for the blood to be transfused into her body.
Thirty minutes that can begin to change the lives of Infinity and millions of others.
Doctor Wagner
Why it is so exciting is this is the first step this is the model by which to
understand whether or not this therapy is going to work. Then we move it on to
other patients’ population.
Doctor Wagner
In many ways these patients are really pioneers, I mean in us learning how to
better treat patients in general with Leukemia and other forms of cancer and
other genetic diseases.
Narrator
Infinity doesn’t feel much like a pioneer.
Infinity It felt funny and I didn’t like it
Narrator
Over the next few weeks doctors hope that the cells in this blood will migrate to
the bone marrow, replace it and produce healthy red blood cells. The process is
called ingraphment. It is a slow process. One the Herrera family remembers all
too well.
Nina’s Dad
Every hour seems like ten hours every day seems like ten days. I am not sure I
can find the words to actually put someone at ease at a time like that. It is a very
traumatic experience and it is not easy to overcome it is something that you have
to go through. Every case is different so you really can’t tell her that her child is
going to be alright because you don’t really know.
Narrator
The Herrera’s were lucky twelve weeks after her transplant her sickle cell
disease was gone.
Nina’s Dad
So she will not be treated as a sickle cell patient anymore?
Doctor
That is right.
Developments
Narrator
Infinity is receiving the same procedure with one big difference, Nina was
genetically transplanted using genetically matched cells from her brother
Christian. Infinity is receiving umbilical cord cells that are not a genetic match.
Doctor
We could find that there are some side effects, some toxicity. One long term risk
is that there is increased risk of infection. That is what we have to monitor these
kids for, the first sixty to one hundred days after transplant.
Bonnie Davis
She is doing great. She is a very strong little girl and I just know that everything is
going to be alright.
Narrator
The medical monitoring will begin tomorrow. Today is a day for optimism, hugs
and hope.
Doctor Lakshmanan
How are you doing?
Bonnie
Okay.
Doctor Wagner
Well, this is the first day.
Bonnie
Yes, I know
Doctor Lakshmanan
I think this day has been a long time in coming. They are still dealing with that I
can tell. It will be good. I think Infinity senses that. Just all the months we have
been thinking about this. It is a new beginning.
Stephanie
She did really well in the beginning she didn’t get the graph versus host disease
at all, her fever went up but it came back down they were able to control it, her
apatite went away for a little while but then it came back.
Narrator
Three weeks after the transplant, trouble. The new bone marrow cells are not
replacing Infinity’s diseased cells. The transplant is failing.
Doctor Wagner
The first milestone was at day twenty one when we checked the bone marrow
function, and the bone marrow is clearly a minor aspect was donor.
Stephanie
They were not finding any ingraphment and just from hearing about it with other
cases they usually see some type of ingraphment even if it isn’t a lot. I saw it
right there that if it wasn’t there in the preliminary testing then it wasn’t going to
show up.
Doctor Lakshmanan
We sat down in the room and I said I looked at the bone marrow and the blood
and donor cells and basically all of those cells were Infinity’s. Which means she
has recovered her own marrow.
Transplant Complications
Narrator
With transplanted cells failing to grow, Infinity’s immune system became
dangerously compromised. Doctors were forced to re implant her diseased bone
marrow leaving her with a normal immune system and sickle cells disease.
Stephanie
I was so hurt and upset, but I was so happy that she was fine. She wasn’t in a
worse position then she started. By the time we found the results out she was
actually getting better and so that made things a lot easier.
Narrator
Neither Stephanie nor the doctors see this as an end. Instead they see it as a
beginning.
Doctor Wagner
There is a great deal of disappointment when it didn’t happen the way you
though it was going to happen. On the other hand we have shown that it was
safe, we didn’t hurt her in any way. I would much rather a child living with sickle
cell disease then a child die of complication that I created. For me it has been as
success, but that is for me. As a parent you want more than that.
Narrator
Three months after the failed transplant, her battle with sickle cells has not
dampened her spirit.
Stephanie
She has been through a lot and after everything she has been through she can
still get up and smile every day.
Narrator
That kind of optimism has helped Tionne Tboz Watkins overcome her disease
and become a rock star and the national spokesperson for sickle cell disease.
Tionne
I was told you can’t dance, you can’t play outside, you can’t cant can’t. Can’t
was the only thing I heard I thought how can I achieve anything or have a
positive outlook on life if you are telling me no no no and Can’ can’t can’t. There
has to be something.
Narrator
Something more than being sick all the time, more than anything Stephanie
Duncan wants to give her daughter a chance to have a normal life. Her doctors
say that despite the first disappointment it is still possible with another transplant.
Doctor Lakshmanan
We got a transplant she has done well. She is no worse than when she started
and we have the option of going again. We are actively planning to repeat the
transplant.
Narrator
The transplant research in Minneapolis is just one example of renewed scientific
interest in sickle cell disease.
Research
Doctor Satcher
Most of the research we are doing today may not be quote, sickle cell research
but it will have a very positive impact on sickle cell disease. The human genome
project, sickle cell may be one of the first diseases to have a major benefit from
gene replacement for example.
Narrator
The early stages of that work have already begun. These mice at the Lawrence
Liverpool laboratories in Berkley California have been genetically engineered to
have sickle cell disease. By studying these animals scientist can began to
develop new treatments perhaps even find a cure.
Doctor Edward Rubin
I think is some ways that having an animal that is many way mimic the human
condition, we can begin doing things with these animals in a controlled matter,
testing different kinds of therapies in a controlled manner that will eventually lead
back to a human in this condition the way that it couldn’t be done when we didn’t
have the assistance for studying the disease.
Narrator
Already scientist have been looking at the sickle cells inside the mice to
understand why they are so sticky and how they clump together restricting blood
flow and causing pain. As so often in scientific research, the new work on sickle
cell is paying off on other diseases too. The doctors at Grady hospitals in Atlanta
Georgia discovered that the pain management tools they are developing for
sickle cell patients also work for patients with other chronic pain.
Nurse
So how is your pain
Patient
Same
Nurse
Same? So, on a scale of one to ten, ten being the worst
Patient
About a six
Nurse
About a six? So ,you did get some relief.
Allan Platt
Sickle cell is a buildup of acute horrible pain and if we can do a good job in this
level of pain assessing it correctly and quickly it should work the same in trauma
pain post-operative pain and cancer pain. These are all areas that could benefit
from good pain assessment and good pain care. How are you feeling?
Narrator
With every small scientific step hope rises in sickle cell patients. Stephanie and
Infinity Duncan are in the eye of the scientific storm. Do you think that you and
Infinity made a difference?
Stephanie
From the information that I have hear them sharing is that other people would like
it. If another child can benefit from her case then I am happy about that.
Doctor Lakshmanan
We think that she has raised a trial, we know something that was basically
unknown that could lead to another transplant because it would be tolerated.
That was our primary goal, safety.
Stephanie
I has brought me closer to my daughter it has given a much greater
understanding of life and shown me how strong she is.
Narrator
Stephanie says many lessons can be learned from Infinity’s transplant
experience lessons for all sickle cell patients and their families, the need for
genetic counseling, the need for early intervention, and the need to make the
most of every day.
Stephanie
You have to treat every day like it is special, not like it is a tragic day or that
something bad is going to happen. You have to try to fulfill each day with the
best of your ability do the most that you can.
Narrator
In a few weeks the experiment will continue. Infinity and her mom are anxious but
hopeful and they have a new member of their support group.
Tionne
I would tell Stephanie to stay determined and keep believing because you have
to have faith in order for your prayers to work. I have learned that too.
Produced by
Discovery Education
www.discoveryeducation.com
Transcribed June, 2011
© 2011, Connections Education LLC. All rights reserved.