♪♪
-Last December, every newborn in the nation
began to be screened for a rare genetic disease
called severe combined immunodeficiency, or SCID.
It was a groundbreaking moment.
-Babies that are picked up at birth with SCID
have a 94% chance
of successfully going on and leading a normal life.
-But the achievement might never have been possible,
were it not for the story of one little boy.
-David was born September 21, 1971.
I heard the first sounds of life
and he was placed in a isolator,
in a bubble, that was a few feet from me.
We thought that the immune system was just slow to develop.
There was never any plan to keep David in there,
in the bubble, indefinitely.
-The sterile bubble was the brainchild
of doctors who feared the worst:
severe combined immunodeficiency,
a rare genetic defect that had taken the life
of David's brother the year before.
But it fell short of a cure.
-There was a gradual realization
that his immune system was not going to spontaneously function,
so I trusted science would find an answer for us next year,
then, the next year.
-This three-year-old boy you see in that picture
has spent his entire life in a plastic bubble.
-To expose him to the air would be to kill him.
-His food, clothes, and toys have to be sterilized
and placed inside the bubble with sterile rubber gloves.
-As the years passed with no solution...
-Since his birth six years ago,
David has lived in a plastic world.
-...America tuned in to watch the milestones
of his curious life unfold.
-The scientists who sent men to the Moon
have achieved another first.
They have found a way to open up the world of a small Houston boy
who has spent his life inside a sterile bubble.
-That he was excited by his newfound freedom
is obvious from the NASA film.
David wanted to do everything.
-I think the best portrayal of his reaction
is when he held up his hands,
the fascination of seeing his hands
in the small gloves for the first time.
-Now, it is possible for him to play catch with his sister,
and dream of even more.
-The nightly news was just the start.
Soon, his story took on a life of its own.
-John Travolta is the boy in the plastic bubble.
-David was unique,
and people pay attention to things that are unique.
When he was about nine years old,
he looked at me, and he said, "Well, I'm a star.
I don't have to clean my bubble,"
and I thought he meant like a star in heaven and I said,
"Oh, yes, you are because you light up my life,"
and he said, "Well, not that kinda star.
I'm famous."
-But David's predicament brought him more than fame.
-Certain things would filter back about the ethics involved
in keeping a boy in this germ-free environment.
-What about the day he says, "I want out of here,"
and you can't let him out?
-I'm not sure that the quality of life
which has been created for David
is going to, very long, be a desirable one for him.
♪♪
-To keep a child isolated,
unable to touch or feel or smell or enjoy
sounds cruel, perhaps.
What did they expect us to do, take David out of the bubble,
which would've been certain death?
-Tell me the letters.
-I. -Okay.
-T. -Okay.
-O. T.
I try to do my best in school.
-I know you do.
-We all knew that a day would come
when a decision would have to be made, either in or out.
Everybody knew that this isolator system,
this couldn't continue forever.
-David had grown into an adolescent
without a clear road forward,
but medical advances were cause for hope.
-They were having success with bone marrow transplant
from an unmatched donor.
Everything seemed to come into play.
He would be free, or we would go back to square one.
-At 3:00 a.m.,
David did receive a bone marrow transplant
administered by Dr. Shearer.
-The new bone marrow, which comes from his sister,
could spur his body
into developing an immune system.
-Everything was just fine.
His blood pressure stayed good.
-There was nothing different.
Except, New Year's Eve,
there was an elevation in temperature
and, the next day, it elevated again.
-Today, David has been removed from his bubble
for the first time in his life,
but the reason for his freedom is not good news.
-David, the 12-year-old boy
who lived in a plastic bubble until two weeks ago,
is listed in critical condition tonight.
-Unforeseen things happened, and that's what we live with.
-David was always joking.
He said something to the effect that, "Here, we have all
of these tubes and all of these tests,
and nothing's working and I'm getting tired."
He said, "Why don't we just pull all these tubes out
and let me go home?"
-12 years ago, in this country,
a very unusual baby was born.
He died last night,
two weeks after emerging into a world
his body could not tolerate.
-Carol Ann vowed that David's life would not be in vain.
-David's story was repeated before the Congress,
as a way of putting a face and a name to the problem
and helping people understand
why it's important to fund research.
-Dr. Michael Blaese, a gene therapy pioneer,
has been studying immune deficiency diseases
for more than five decades.
He says that, in the years that followed David's death,
progress in bone marrow transplantation, alone,
offered most children a virtual cure.
-We know that, if transplantation is done
sometime in the first three months,
that the chances of cure is in the range of 95%.
-But quick diagnosis was key.
-There's Brandon.
-Brandon Michael.
-He's one hour old.
-He's exactly one hour old. -An hour old.
-Brandon looked like a healthy, normal baby at birth.
-Brandon's got his pacifier.
He's trying to put it back in his mouth.
He was eight weeks old yesterday.
-Hey, baby. -"Hi!"
-Brandon's almost three months old.
-[Sneezes] -He's just sneezin'.
Hi, baby!
-Until he became about six months of age
and came down with what we thought was his first cold.
-Yesterday, Heather had to take Brandon to the doctor
because he didn't feel good. -[Coos]
-We had no family history
of any kind of serious conditions,
so, really, we were hoping that,
whatever it was that Brandon had,
he was going to be able to fight and get over.
Unfortunately, instead of getting better,
he got progressively worse.
-Within days, she was rushing Brandon to the hospital.
-His fingernails were blue.
His lips were blue.
It was quite obvious that he was struggling to breathe.
-But, for three weeks, doctors couldn't figure out
what was wrong with the child.
-It was after the skin biopsy came back
that they first told us they thought he had SCID.
They explained to me a little bit more:
"We don't put babies in bubbles anymore,
but what we do for them to treat this
is a bone marrow transplant."
However, they said, at that point,
that Brandon was just way too sick.
"We've done everything that we can for him
and, unfortunately,
we're going to have to turn the machines off."
All the family came in and took their turns saying goodbye.
-If you can identify the patient and get them treated,
you essentially cure them, almost all of them,
but, once they have that infection, that first infection,
success rate drops substantially.
It's a problem of rare disease.
Patients get missed.
-Most pediatricians still couldn't recognize
the signs of SCID.
Awareness of the disease had receded
along with David Vetter's story,
replaced in the public's mind by an image that had
only the vaguest connection to the boy,
who had once captivated the nation.
-What are you lookin' at?!
You never seen a kid in a bubble before?
-[Scoff]
-[Nervous chuckle] -Of course I have. Come on!
My cousin's in a bubble.
-You'll be living in this bubble.
It's clear plastic, so the world can see how normal you are.
[ Laughs ]
-Such portrayals were painful
to the parents of immune-deficient children,
but they had one unexpected upside:
publicity.
-That was very hurtful,
but our driving focus is newborn screening,
to let the world know that this is a condition
that's still taking our babies' lives every day.
-The death of Heather Smith's first child
had taught her that early detection was essential.
Forewarned, her second baby
was given a landmark bone marrow transplant,
while still in the womb.
Taylor is now 24 years old
and has just graduated from college.
-And, to look at him, you'd have no idea that he has
a condition called severe combined immune deficiency.
-Today, gene therapy is at the forefront
of treating the disease.
-Doctors take out the patient's bone marrow
and replace their defective gene with a healthy copy,
then reinfuse the cells back into the patient.
-In 2008, advocates like Heather Smith
helped push Wisconsin to begin screening all newborns
for severe combined immune deficiency.
In fits and starts, other states followed suit,
leading to the realization that this genetic defect
was more common than generally thought.
-David's story is still helping people today, 30 years later.
-And not just as a symbol.
Important medical advances resulted
from studying the young boy,
from the discovery of the damaged gene
that causes the most common form of SCID
to another revelation.
-The little Houston boy provided a vital missing link
between a common viral infection and the development of cancer.
-The final tragedy of David's life
was that the transplant had initially worked,
but, unbeknownst to doctors, the donor's bone marrow
contained remnants of an old virus,
which, when transferred
into David's immune-compromised body,
triggered an aggressive cancer.
It was the first time this connection had been observed.
♪♪
-What he gave us was a powerful lesson
in many areas of medicine, and just in life itself.
David was a very courageous boy.
-I always thought,
at some point, when David left the bubble,
that he would be a researcher himself
and would help mankind that way.
-Hi, Mom!
-It turned out that he is helping mankind,
but in a different way.
♪♪