Life on the Line
Erin’s Story
Season 5 Episode 2 | 26m 47sVideo has Closed Captions
A mysterious illness sends Erin Tharp into a coma.
Fourteen-year old Erin Tharp is a star student, but then something happens that will change her life forever. When a mysterious illness sends her into a coma, doctors and family members are left desperately trying to solve the mystery. Six months later, Erin is still in a coma, and the family is hanging onto their last shred of hope for her future. Will something trigger Erin's awakening?
Problems playing video? | Closed Captioning Feedback
Problems playing video? | Closed Captioning Feedback
Life on the Line
Erin’s Story
Season 5 Episode 2 | 26m 47sVideo has Closed Captions
Fourteen-year old Erin Tharp is a star student, but then something happens that will change her life forever. When a mysterious illness sends her into a coma, doctors and family members are left desperately trying to solve the mystery. Six months later, Erin is still in a coma, and the family is hanging onto their last shred of hope for her future. Will something trigger Erin's awakening?
Problems playing video? | Closed Captioning Feedback
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Learn Moreabout PBS online sponsorship[Lisa Ling] Fourteen-year-old Erin Tharpe was a star student.
Erin had dreams of going into the space program.
So, anything that she did was full go.
But then, something happened that would change Erin's life forever.
[sound of sirens] Looked like she'd fallen back, you know, from a bar stool.
And I caught her.
I noticed her eyes were kinda rolled back in her head.
Her fingers were actually bent backwards.
I just remember thinking, this isn't supposed to be happening.
We walked up to the head of her bed, and her eyes were kind of fluttering open.
Erin opened her eyes, and I asked her, I asked her, "Erin, are you okay?"
Shook her head "no."
[dramatic music] [dramatic music] [shallow breathing] [dramatic music] [dramatic music] [voices, gunfire] [dramatic music] [music swells] [music swells] [machine beeping slowly] [Lisa Ling] Life on the Line An inspiring look into personal journeys of hope and determination.
[Linda Tharp] She was just sort of a typical high school girl.
Had loads of friends; loved doing things with them but was really focused academically.
She didn't let her social life overshadow her academics.
[Sarah] We had fun.
With three sisters, I feel like there was always a lot going on.
Erin was always the ringleader, though.
[Kelley] I just looked up to her like she was the greatest person alive.
She was just so smart, she was funny, you know, kind to her sisters.
Um, she was just such a, such a good role model.
[Gary Tharp] Junior high was when she really started to blossom on academic stuff, 'cause the opportunities were greater, and she started in uh, International Baccalaureate Program.
She loved the challenges.
Um, you know, anything that she did was full go.
[Linda Tharp] Erin had dreams of going into the space program and had actually been in contact with the woman at the astronaut-selection office at NASA.
With her drive and intelligence, anything was possible.
Anything was possible for her.
[Lisa Ling] But then, something happened that would change Erin's life forever.
In January of 1998, Erin had, she had, hadn't gotten her first report card yet, and she had sort of developed a little bit of a cough.
Erin's cough turns out to be bronchitis, but she doesn't miss any school.
But then, one particular morning, before school, she and her two younger sisters were sitting at the breakfast bar, um, eating, and I could see her kind of, out of the corner of my eye, poking around.
Just taking her time.
I looked up, I said, "Erin, hurry up.
You're gonna be late."
And I said, "What are you doing?"
She had her utensils in the wrong places.
You know, she had, she was trying to pick up a bowl of cantaloupe with a spoon, and she had her fork in her cereal.
And I said, "What are you doing?"
And, for a lack of better wording, she lost it.
She looked down at what was in front of her.
She realized her mistake, and she just became hysterical.
I screamed for Gary to come and help me.
I go in there, and I see Erin actually starting to, looked like she's falling back, in a, in, in the barstool.
And I caught her.
I noticed her eyes were kinda rolled back in her head.
Her fingers were actually bent backwards.
We had never seen anything like this.
Our three girls--it's cliché to say but it's absolutely true--were the picture of health.
We had no experience with anything of this sort.
I just remember thinking, this isn't supposed to be happening.
I took the phone into the living room, away from the kitchen, because she's still screaming at this point.
And I just needed to clear my head and call 911.
We had a community hospital down the street, and at that point she had calmed down.
Gary was able to kind of talk her down, and he took her to the emergency room, and I took her sisters to school.
[Lisa Ling] Doctors determined that Erin's episode is simply due to stress.
They write a prescription for Valium, and the family heads home.
She called her friend, her best friend, that afternoon to see, see what she'd missed at school.
And, that was that.
She had dinner and went to bed.
Everything seemed like okay, we're getting back to normal here.
[Lisa Ling] But the next morning, things are far from normal.
The next morning, again the girls are sitting at the breakfast bar with their breakfasts.
Um, Erin had the right utensils, so things were looking up.
And, Sarah said to her, "Erin, why do you keep doing that?"
And I looked up from making lunches, and Erin had one eye covered with her hand.
And she answered Sarah, and she said, "Because I'm seeing double."
And, I could just feel my stomach drop.
We had had a referral from a pediatric neurologist and made arrangements to go see him.
Um, that was the kind of "the day."
An MRI looks mostly normal, except for a small amount of increased pressure in the brain.
He was going to do a lumbar puncture.
This is about 7 p.m. We left the room and went down the hall to use the pay phone, and we heard our name paged on the overhead P. A. system.
Will the parents of Erin Tharpe please return to her room.
We ran back to her room, and it was a scene that no parent ever wants to see.
[music continues] They were pushing her bed out of the room.
A nurse was straddling her.
Um, what we learned later, it's called "bagging."
She was hyperventilating air, essentially.
And I said, "What went wrong?"
And he said, "Nothing went wrong for the procedure.
I couldn't do it."
He said, "She's too unstable.
One of her pupils has blown."
He said, "I'm on the phone with Loma Linda.
They're gonna send a transport team.
This is nothing that could be handled at this hospital.
It's out of our area of expertise."
We walked up to the head of her bed, and her eyes were kind of fluttering open.
Erin opened her eyes.
And I asked her, I asked her, "Erin, are you okay?"
Shook her head, "no."
[Lisa Ling] Erin is transferred to Loma Linda University Health, and taken to the fifth-floor Pediatric Intensive-Care Unit.
It didn't look like her anymore.
There were so many medical personnel in and out of that room.
Doctors and nurses, getting tubes set up, and monitors set up and IVs set up.
The first few days were so up and down.
Um, we were told she wouldn't survive.
We were told, if she can kick this hurdle she'll be okay.
We were told by doctors quite a few times that, you know, tonight's gonna be tough.
You know, we don't, oh, we don't know what the outcome's gonna be.
Um, we don't know that.
We just didn't rec--we didn't, we didn't accept that.
Um, she was too much of a fighter.
Just didn't accept it.
We knew she would get better.
[Lisa Ling] Doctors drill through Erin's skull to place an intracranial pressure monitor in her brain and begin draining the excess fluid.
As the pressure drops, the investigation begins.
They started drawing blood for tests, and they tested everything.
Nothing came back positive, so ultimately it was a diagnosis of exclusions.
They believe what happened is that the bronchitis she'd had earlier, in January, crossed what they called the "blood brain barrier" and somehow had invaded the brain.
Viruses usually can't penetrate the blood brain barrier, but apparently this one had.
The diagnosis that was offered by pediatric neurology was an Acute Demyelinating Disorder.
Very complicated name; very unusual and rather rare condition, which results in severe, um, loss of brain function.
[Linda Tharp] Ultimately, her diagnosis was Profuse Demyelination of Undetermined Etiology.
[Lisa Ling] As the medications are slowly weaned off, Erin is in a coma.
[Linda Tharp] Eventually, we were told that she was in a permanent vegetative state.
[Lisa Ling] Erin is moved to a children's nursing home.
[Dr. Brandstater] She was transferred from Loma Linda to Totally Kids for ongoing care.
The prognosis was very uncertain, but it looked grim.
[Linda Tharp] To voluntarily have your child admitted there is the hardest thing, the hardest thing that I have ever ever had to do.
Her sisters--and this was now summertime--could spend all day long with me there, and they loved it.
They had plenty of friends who were offering, 'they can come stay with us for the day, we're gonna go to the beach.'
They chose to be with their sister instead.
[Lisa Ling] Erin has now been in a coma for six months, but the family is still hanging on to hope that something can change.
[Gary Tharp] We were told early on that if Erin was to make a recovery, that we needed to strike her memory, or, or, have something that would help her on that, with that.
So I made a tape of her friends.
I mean, they were her core group.
[Linda Tharp] Her classmates recorded a tape, and it was them, one lunch period, all in one classroom.
It just went around, they all said "hi," they caught her up on gossip, and I played that every morning for her and, and it was the, the noninterest that she showed to everything else, um, that had not changed at all.
But I'd still put it on every morning.
One particular morning, I believe it was in late August or September, and the tape was playing, and I turned around, and I thought I saw her smile.
And then it was gone.
So, I rewound it back to this particular friend and played it again.
And when he came on, she smiled a second time.
So I put it back for a third time on this boy, and there was nothing.
She, she did not smile that time.
But I had seen it.
I had seen it.
And that was the first time in months that I saw a glimpse of Erin.
And the first time in months that I had any ounce of hope for the future.
[Gary Tharp] Linda called me and said, "Erin smiled."
"What are you talking about?"
She goes, "Today I showed her the tape, and Erin smiled."
[Linda Tharp] And he said, "I'll be right there."
He said, "Tell her I love her."
I knew she was, she was still there at that point, and I think un-- until that point we didn't really know how much, you know, she was with us.
Um, and I think once we saw her smiling, it's like she's, she's still in there.
So... [gentle music] [Erin with computer help] I had been told what happened in 1998, but I have no memory of it.
Everybody kept telling me I had been really sick, but I was in denial.
I remember watching the video my dad took of my friends at school, but I couldn't respond.
I loved seeing my friends but was confused why I wasn't there.
[Dr. Brandstater] When I saw her, she was still unable to move her limbs, her trunk, her face.
But, she could blink.
She could answer our questions.
We said, "Blink once for yes, two for no."
And she could do this consistently.
At that point, she was unable to move any of her limbs; was totally paralyzed and was fully aware of her environment.
This is a condition which we refer to as being "locked in."
She was trapped in her body.
[Erin] I remember from about six months' time waking up.
It felt like I was in a dream.
But once I was fully awake, I was so scared.
I didn't know where I was or why I was there.
It is as if I woke up from a very deep sleep or from a dream, and for a second you are confused.
Not knowing where you are, but you hear laughing and talking.
She had probably passed through a period of, from coma into gradually coming more aware.
We recognized that this Acute Demyelinating Brian Disorder had only affected part of her brain, primarily the part of the brain that was controlling her motor pathways.
She was paralyzed because of that.
But the rest of her brain had been spared.
Finally, she was able to get a little bit of movement in her left hand, and given a keyboard or letter board, she could move the finger to point to letters.
[Erin] I had first started communicating by using a spelling cube my dad made.
[Linda Tharp] Gary fashioned such a rudimentary object, um, but it did the trick.
It was a five-sided spelling cube, and it basically had the alphabet on it.
And she could barely, with her finger, point to letters to spell words out.
And after that, it felt like the floodgates had opened.
We would fight over who got to hold that spelling cube for her, and kinda go through the tedious, you know, letter by letter.
And we would argue over who got to do that, because it was, I got to see my sister again.
It was just such a neat way to be involved in her life, even though, you know, in a lot of ways we hadn't had that opportunity to for months.
The family was wonderful in the way and the support they were able to give her.
Her mother was just incredible, and Erin responded.
She just uh, took off.
And uh, surprised everybody in what she was able to do.
[Lisa Ling] Two of Erin's high school teachers begin to meet with her on a weekly basis, and the results are surprising.
[Linda Tharp] She actually began to not just recall what had been taught previously to her getting sick, she began to learn.
And that was joyful for everybody concerned.
Against all odds, Erin returns to high school with the help of an aide and a speech device.
[Linda Tharp] She returned to high school.
She returned to the campus that she had walked the halls of, and she was in a wheelchair.
She had been physically out of the system educationally that long.
She was able to catch herself up, with the help of these teachers, and return as a junior with her original class.
[Gary Tharp] She graduated with the class.
I think there was a little over 500 kids in her class, and she graduated 30th in her class.
Uh, high honors.
A very proud moment.
[Linda Tharp] We asked the two teachers, who worked with her and were so instrumental in her returning to school, if they would escort her during the ceremony.
And so, they flanked Erin, as she was wheeled into the stadium.
The principal of the high school mentioned Erin in her commencement address, and her entire class and the entire stadium full of family and friends gave Erin a standing ovation.
[sound of horns, applause] It can be a hard time in a teenager's life, in the best of circumstances.
Yet, she had the grit and the determination and the strength to do it.
And so, to me, her biggest accomplishment is the fact that she has not let this disability define her.
[Lisa Ling] After graduating from high school, Erin goes on to become an ambassador for Free Wheelchair Mission.
Free Wheelchair Mission is a non-profit organization that provides wheelchairs at no cost to people with disabilities, who live in developing nations.
The mission is to provide mobility to the poor in developing countries, and she had sort of taken this personal challenge to raise funds for us.
Uh, so she became first a volunteer then an ambassador.
And she would go in front of churches and tell her story.
Hearing it from her was just so compelling for people.
I don't know how many thousands of wheelchairs she's helped us raise.
I'm sure it's in the thousands.
And uh, when you give a wheelchair to an individual, it touches the family, touches the community.
And she's been willing to go anywhere at any time and make these presentations, and we're up to almost 1.2 million chairs we've given away, in 93 different countries.
[Lisa Ling] In 2001, Erin is granted a wish by the Make-a-Wish Foundation.
She chooses to meet the President and First Lady at the White House.
In more recent years, an unexpected meeting has brought about some surprising changes in Erin's condition.
[Linda Tharp] I received a phone call from somebody at Loma Linda, inviting us and Erin to a gala that was going to be held at Dr. Brandstater's house.
A gentleman came up to me, and he said, "I, I think I have something that might be able to help your daughter."
I was first introduced to Erin at an event, and the more I heard her story, um, the more I thought, you know, maybe there could be a way that the treatment I was doing, may help Erin.
[Lisa Ling] Intraneural Facilitation is a new type of treatment known as INF.
Intraneural Facilitation is a brand-new treatment, and it is undergoing research.
And Loma Linda being an academic medical center, we feel that research is important.
We were pretty much at the point where, if it was safe, we were gonna try anything that was out there.
[Lisa Ling] Erin begins her treatment in January of 2017.
She is the first patient with locked-in syndrome to undergo INF, and her case will be included in the research.
INF works by bringing circulation back into the nerves.
By increasing blood flow to certain areas, the hope is that the nerves will start to heal.
What happens is Erin lays down-- she's transferred onto a table.
He is able to, by applying pressure on different parts of the body simultaneously, shunt blood away from one area towards another area that essentially, he believes, reduces inflammation.
He'll touch a vein on her neck and her temple, just back and forth.
It doesn't look like anything is happening, yet Erin will become beet-red; she will start perspiring; she will become hot.
He says, "Some people become cold."
So clearly, there's something happening.
I wish it was like, uh, Dr. Spock.
You know, you have the little control, and you know it just goes over the body like this.
You know.
Have you ever seen, did you ever see "Star Trek"?
No.
Okay.
Well, anyway, you know, they had this little tool, and that would be the tool that would do it.
And it was like scientific, or something, but there is a lot of pressure points, and [indiscernible].
The progress has been slow but with clear results.
I've seen a lot of changes in Erin since the first session.
But the most exciting part of her changes is seeing Erin herself.
And to see her sort of coming out.
Um, her muscles, her expressions, her face, her smile, um, her personality, um, is become more and more evident.
In essence, she's coming out of her locked-in syndrome.
I'll never forget the day that she took her first steps, uh, in our clinic.
It was, it was amazing.
We brought her into the clinic and um, we had her stand there.
I really had to push her left foot, but her right foot was the one that took that first step.
And it barely took a step.
She starts laughing.
Her, her mom and I were both starting to tear up a little bit.
Then we did it again and she walked even more.
And she's laughing.
We're crying.
It was really just an amazing experience.
I think we just took a moment to just kinda take in all the feelings, and uh, just be amazed that after 15 years, you know, this was, this had actually occurred.
Oh-h-h. Ah, ha-ha-ha-ha-ha.
[Erin] Working with Mark is exciting.
I experience something new almost every time I am with him, like my walking.
After so long without any changes, it is a relief to see progress.
Walking now makes me feel proud and almost free.
How her system is healing, it seems to be incremental, but it's also steady progress.
And so, my goal for her is to, to get to the very best place she can be in recovering from her illness.
And uh, you know, we'll just see where that takes us.
[Lisa Ling] Today, Erin sees Mark three times a week with the hope of regaining more movement and eventually walking on her own.
[laughing] [Erin] I am most proud that I am still here.
I definitely did not do it alone.
One of my goals is to keep making progress working with Mark.
I also want to continue to working with Free Wheelchair Mission.
Next, I want to write a memoir.
The thing I'm most of proud of her with, you know, obviously the accomplishments that she's had.
Um, graduation, and her Free Wheelchair is another big part of her life and, but again, it's the, how she takes on every day.
She's a role model to me.
I think I'm most proud of her spirit.
I think anyone in her situation could have given up on life, and she, it only motivates her to want to help other people.
If she can wake up in the morning and have a smile on her face and want to take on a day, I've got no issues.
No issues at all.
It's very humbling to see Erin and uh, to be a part of her journey.
To be a part of somebody that has worked so hard, has such an incredible spirit, such an incredible heart.
To be a part of that process is just mentally gratifying.
To see her walk and to see her laughing when she's walking.
There's very little that's better in life than to, to see that level of improvement.
Even after 15 years of not walking.
We're definitely super close as a family.
Um, I talk to my mom every single day on my way home from work.
You know, in talking to my mom, I get to hear about what my dad's doing - Erin's on speakerphone.
Um, we have our group text that we're in.
Dad has asked to be removed from that because we text too often.
[Linda Tharp] Erin has touched many lives that are too numerous for me to count.
She has probably been responsible for the donation of 1500, 2000 wheelchairs to Free Wheelchair Mission.
[Erin] I am helping people, present and future, that I will never meet.
None of this would have been possible if I had not fought to survive.
The degree with which she has overcome tremendous physical odds and made the most of what her residual abilities are is the most amazing thing to me.
She is a remarkable testimony to the indomitability of human spirit.
[Erin] I want people to know that life can still be wonderful after great adversity.
[gentle but hopeful piano music] [Lisa Ling] Coming up on Life on the Line: At one of the largest NICUs in the country, two babies are fighting for their lives.
One, battling a deadly disease.
[male voice] Fifty percent of the babies in this condition do not make it.
[Lisa Ling] The other, fighting to take his first breath.
[male voice] Abnormal part of lung tissue could actually cause the lungs to collapse.
The risks are extremely high.
[Lisa Ling] His mother, hoping just to hear him cry.
This program was made possible by the Ralph and Carolyn Thompson Charitable Foundation, the Foundation for Adventist Education, and the Kendrick Foundation.
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