(lively music) - [Announcer] "Illinois Stories" is brought to you by the Corporation for Public Broadcasting, Illinois Arts Council Agency, and by the support of viewers like you.

Thank you.

(lively music) - Hello, welcome to "Illinois Stories", I'm Mark McDonald in Springfield.

Imagine yourself blind at birth, and not really being able to make sense of the world until 24 years later, you wake up from a surgery, and your eyesight is good enough that you're able to get your driver's license.

Well that's the story about Danny Sullivan.

It's also the story about his brother, David Sullivan, and their family.

And how it's been impacted by the advancements in medicine.

Danny Sullivan, after 24 years of struggling through bad eyesight and probably being barely able to identify most things around you, your whole life, one day you wake up in a hospital.

You're 24 years old, and you find out what the world really looks like.

What did that feel like?

- It's unlike anything else.

Absolutely beautiful.

Like the simplest things would take my breath away.

Like just driving by and being able to see every blade of grass.

How the sun shines and glares off things, is really beautiful.

- Well it is, isn't it?

I mean, we all take it for granted, because most of us had our good sight from birth, and we don't, and you, you were doing okay, it's not like you weren't getting through school, and you were doing well in school.

But man, you were missing a lot, weren't you?

- Yeah, I mean, I could see things up to 16 inches away from my face.

But after that, it's a little bit of blur, hard to focus on things.

- [Mark] Yeah, and now 24 years old you got your driver's license, you're driving now.

(chuckling) And you're working.

- Yeah, I know.

- [Mark] Yeah, so what, okay, so tell me about driving and working.

- Oh well, I had been walking to work, and now I'm able to drive, and it's terrific.

And working, I wasn't able to really work before 'cause all I could see was 16 inches out of my face.

- [Mark] Right.

- It's nice to have a job and a car.

- [Mark] Yep, and you don't, I mean, you didn't have a work history, so getting a job isn't all that easy.

But you got one, didn't you?

- Yeah.

- [Mark] Where do you work?

- I work at Taco Bell on Sixth Street in Springfield.

- [Mark] Yeah, making those tacos.

(laughing) - Yeah.

- [Mark] Hey listen, that's absolutely wonderful.

And now you're in a space where you can identify everything and you're probably very useful to them, that's great.

But tell me about enjoying the world, because you're a kind of guy that always has done that.

You always made the most of everything.

But the reason I know that about you, is because you've already written a book.

And you're working on number two.

And this was probably written when you had bad eyesight, wasn't it?

- [Daniel] Yeah, bad eyesight, plenty of time.

(laughing) - [Mark] Yep, yep.

- There's that, there's a bonus to having some bad eyesight.

- Tell me about, just a little about the book.

- It's about a man's search for his family after this apocalyptic scenario happens.

And he travels this wasteland to try and find his family after they've been taken.

- Does it work out okay in the end?

- Yes.

- It does?

(chuckling) Sort of like your story.

- Yeah.

- [Mark] You and your brother, David, both were born with bad eyesight.

- Yes.

- [Mark] His was not as severe as yours.

And we're gonna meet him in this program, too.

But his was not as severe as yours.

But you both had struggles all your lives, and you helped each other, didn't you?

- Absolutely, yeah, I saw colors better than he did, and so, he had the better eyesight.

So we made a good team together.

Like he's able to identify things, and I'm the one to kind of tell the color they are, so.

- [Mark] And he's two years older than you are.

- Yeh.

- [Mark] And another thing that makes this very interesting is the fact that the doctor who did your lens transplant surgery is a member of your family.

- Yeah, my cousin Michael.

Michael Jones.

- [Mark] And we're going to meet him today, too.

And he can tell us a little bit more about the whole procedure.

Boil this down a little bit for us.

You go through all these years of struggling, and you had a condition called Nystagmus, correct me if I'm wrong.

- Yeah, Nystagmus.

- But your eyes, you couldn't focus because they were jumping around all the time, is that right?

- Yeah, it's like my eyes are on a plane, and my plane shakes around like this.

And so it makes it very hard to focus on things and basically to see normally.

I see, or I did see, just a wobbly little plane of movement.

And so, hard to focus on faces.

And hard to tell what's happening around me.

- And this way, look at some of these pictures of you, before you had your treatments, we can see that your eyes weren't, you were trying to look, find the camera to look into the camera, but you weren't.

Your eyes were playing tricks on you.

And you lived with that all day, every day, for years.

How did you find out about this treatment that was gonna help you through that part of it?

- Me and my mom found out, this organization called American Nystagmus Network.

And we went out to one of their conferences two years ago in New Orleans.

And when they had the speaker, Dr. Hurdle, who does this Nystagmus surgery, and so we figured that out, and I got an appointment soon after.

And then had the surgery with him.

And then I was able to have the surgery with Michael because of the first surgery.

- [Mark] And Michael's your cousin again, right?

- Yeah.

- [Mark] Yeah, yeah.

Okay so really, you and your mom did the homework on this, it wasn't like there was a well-known way to refer you where you needed to go.

Or otherwise, you would have been referred there.

You had to find out about it on your own.

- Right, not too many people have Nystagmus, so it's not a really well-known surgery procedure.

So, yeah.

- [Mark] Okay, so there was a period, so then you got that part behind you.

But then you knew that you still needed this lens replacement, right?

- Right.

- [Mark] You know who to go to for that one.

(laughing) - Yeah, that's where-- - [Mark] The best doctor in the mid-West, right?

(laughing) - My dad's like, "Hey, we can go see your cousin Michael."

And sure enough, we did, and here we are.

- [Mark] He practices in St. Louis, doesn't he?

- Yeah.

- [Mark] And he's gonna come by here and he's gonna talk to us about that procedure, as well.

We're gonna, like I said, we're gonna hear from a lot of people.

Well, Danny, it's refreshing to hear you talk about it.

And I think just meeting your family is gonna be a rewarding experience.

Congratulations.

I want to show one other thing before we go.

In your driving, you are required to wear these, right?

Those don't look like they'd be much fun.

What do those do for you?

- They make me look silly.

(laughing) But they make me be able to drive, as well.

They're red lenses, and they help dim down the normal light of everyday to manageable sight for me to be able to see.

- Yeah, yeah, well congratulations.

Thanks for the visit.

- Thank you very much.

- Well David, it's been quite a life for you and your brother together, hasn't it?

- Oh yeah.

- Now brothers usually share a lot, but not too many of them have shared what you two shared.

Which is that bad eyesight.

Especially like little kids.

Because you know, I'm sure as a little kid you don't really understand that.

You just know that you're different, and that you're not getting along, you know.

- Yeah.

- And so, you probably leaned on each other a whole lot, didn't you?

- Oh yeah.

- What was it like growing up?

- Oh man, we worked together on everything, we do everything together.

He's a great little brother.

- He needed guidance though, too, didn't he?

- Oh yeah.

- [Mark] Because, like I mentioned, you both had bad eyesight.

But his, his was almost debilitating, where I mean, if he could only see 16 inches in front of your face, there's a lot of things you just can't do.

- Oh, yeah.

It never really stopped him from trying.

(laughing) - [Mark] I'm surprised he lived through it.

- Oh, yeah.

(chuckling) - [Mark] He was pretty brave kid, wasn't he?

- Oh, yeah.

- [Mark] Yeah, yeah.

Give me an example or two of how you helped each other through the years.

You both went to Petersburg Grade School, and then you went to Porter High School.

So you always were two years apart, you were two years ahead.

And imagined he looked to you for a lot.

- I know that we always played, I realize this is probably not the best example, but we played basketball together all the time.

And we were always on the same team.

And I don't know how, but he could drain threes all day.

So, I would have to get rebounds or whatever.

So I just pass off to him.

- [Mark] Even though he couldn't see the basket?

- He can't see the basket.

He's swishing threes.

(laughing) So crazy.

- You also helped him out a little bit.

Like you used to be in theater, right?

And you helped him get involved in that.

- Oh, yeah.

He did, I did stage crew all four years of high school.

And he joined up, and he ran the curtain for 'em.

He just Johnny-on-the-spot most of the time.

(laughing) - Never missed a cue, huh?

Well, maybe once or twice.

- I wouldn't say that perfect.

- Well that's a good thing for him, though, because he didn't have to find curtain, he knew where the curtain was, he just had to be there.

- Yeah.

- Be on cue.

(laughing) - You two have so much in common because you both had this Nystagmus condition.

And you both had it operated on in the same day.

- Yeah.

- But were you first, or was he first?

- He was first, and then- - Oh so, they practiced on him.

- [David] Yeah, Guinea pig.

Yeah, I wanted okay.

If anybody's surgery is getting messed up, it's this guy.

(laughing) - But his worked out very well, and yours did too, right?

- [David] Oh yeah.

- How long was it after you had that surgery that you knew that it had been a success?

- I would say a couple of months would have passed.

But, until I think, a grainy feeling from the stitches like wore off, and then, we were able to see, like when I first saw it, it was pretty cool, getting to see everything super-sharp.

- [Mark] Do you remember what the first thing you saw that you went, "Oh my goodness!".

- Oh man, probably Dad's face.

(laughing) He was like right by our bed when we woke up, and it was like, it was still really grainy, or whatever.

But it was like how in the world.

Like I have this to look forward to when I'm older?

(Mark laughing) - [Mark] Well I'm glad you kept a sense of humor about it.

(laughing) Well, your dad's a handsome man.

- I know.

(laughing) - [Mark] And then you also, you differed in your brother's situation, because then you did not have to have lens replacement like he did.

But you did still need some further help, didn't you?

- We just, Michael did, like LASIK for us.

And that worked out really well, as well.

- And you've been able to drive, and you've been legally sighted for some time?

- Mm-hm.

- Yup.

- He gave us the lenses Danny showed you.

They helped see red lights and stuff, like brake lights, I can see them way better now.

- And you're color blind, aren't you?

- Mm-hm.

- [Mark] Yeah, so you can't see colors, but your brother can't see objects as well.

So you kind, you still, you sort of help each other out, don't you?

- Oh yeah, oh yeah.

- Okay, thank you.

- Yep.

- Well the family calls you Doctor B.

You've been treating, well, the boys, they're men now.

- Yes.

- Since they were boys.

And very familiar with this condition called Nystagmus, which is extremely rare, especially for two in the same family, right?

- Correct, yes.

- How rare?

- I wish I could quote you some numbers, but I don't.

I've been practicing 35 years, and I've never seen a case where there's two members in the same family that have it.

So that's rare.

And I've probably seen 150,000 patients in my lifetime.

So that's a pretty small number.

- Pretty good feel, yeah, pretty good feel there.

What's it like, I know that's a bad question, 'cause you can't know what it's like, but what does it do to a patient?

What does it cause a patient to experience?

- Well, what happens is, because your eyes are constantly scanning.

They don't settle on a point, so you're essentially trying to, you're getting a partial view of what you're looking at.

Because it's moving so fast, that you're only getting a glimpse of what's in front of you.

And as a result, you get, it decreases your visual acuity.

Since the macula is where we get our sharpest vision from.

It's being scanned back and forth.

It's similar to trying to move your head back and forth in a very quick fashion with glasses on.

And in their case, they never really got a sharp focus because eyes were constantly moving.

It's like, probably a closer analogy would be trying to walk on a railroad rail, while you're dancing back and forth.

Okay, it's that essentially, that motion that prevents you from zeroing in on what you wanna see.

- [Mark] I mean, it makes me think, that you'd be sick all the time.

Just trying to, trying to make sense- - No because they had it since birth.

So they adapt to it over their lifetime.

And if we tried to simulate it, yes.

We would get sick to our stomach.

But not for individuals who were born with it.

- They had this procedure done on the same day in Ohio, and you were aware that they had chosen to do this, and they went ahead to do it.

What was your response when you found out that they had come out the procedure?

- Well, Danny called me one day and said, "Dr. B., I had this procedure done."

And he told me about it.

And I said, "Wow!"

I was just amazed.

And then he came and told me, and then I saw what the results were, because his vision was dramatically better.

And he mentioned that he had cataract surgery, or lens extraction surgery, excuse me.

To correct all, he had a huge lens prescription.

You know, you get into those levels with the amount of astigmatism he had, that's also more on the unusual side.

That's not very commonplace.

Where his brother had a much lower prescription, but none the less, that's part of the reason why he didn't have to have a clear lens extraction, he had LASIK instead.

The biggest part was getting their eyes to stop moving.

And that procedure, when that was accomplished, their vision started to improve.

The only difference was, near-sighted people with glasses on, the images are little.

Because it's the function of the optics.

And once you correct that with the lens extraction or LASIK, you get a more normal-sized image.

And things are bigger.

And when you can see something bigger, it looks more normal.

You not sitting there looking at a raisin, you're looking at an orange.

- [Mark] This is very good news for people in the future, isn't it?

- Yes it is.

Because when we were talking earlier, that surgery is pretty unique.

And sometimes it doesn't get the exposure that it should.

Because there are procedures that are done out there, that are successful, but you don't hear about them.

I only heard about it through the family.

They said we found this doctor that does this.

So I said, "Go for it.

"If he can do this, "that's gonna be the best thing that ever happened to you."

- Yeah, yeah.

Dr. B., thanks.

- Your welcome, okay.

(chuckling) - Dr. Michael Jones is a member of the family.

You watched these young boys become men and go through all these decades of problems trying to adjust to this, to this disability that they were born with.

It must of felt fantastic to be able to, as a cousin, to be able to go in there, and be able to make them see again.

It just must had been wonderful.

- It was, but as a testament to them, as they were growing up, I didn't even realize how bad their vision was.

Until I actually got to see them as a physician 20 years after I had already left town.

I knew that they had eye problems.

I thought maybe they had a pretty bad prescription.

But they were able to actually mask their disability.

They were very productive, you really could not tell.

One of them swishing three-pointers and can't even see.

So I truly did not understand the depth of their disability until I saw them as a physician.

And when I saw them, I think I believe I saw Danny first.

When I saw him, I really, I could not believe what he had.

I mean a rare condition, rod-cone dystrophy.

Which means the cells in his retina just never developed like yours or mine.

And the amount of vision loss he had experienced, I had no idea.

By the time I got to him as a physician, he'd already had probably the most important surgery, which was trying to get rid of his Nystagmus, or the shaking of his eyes.

So once they were able to settle his eyes down, then it was just a matter of correcting the prescription that was in his eyes.

So when we think about vision correction, we think about LASIK, that's what most people have heard about.

Well, Danny's eyes were so bad, he did not qualify for traditional LASIK.

His prescription was too great for our laser to treat.

So I actually had to put a lens implant inside his eye.

And David's prescription wasn't quite as bad, so I was able to just do tradition LASIK on him.

But I really didn't understand their depth of their vision loss until I saw them as a doctor many years later.

- [Mark] I guess Danny, as you mentioned, his prescription was so bad that you needed to do a lens replacement.

Will that be a permanent fix for him?

- Yeah, yeah.

He is permanently fixed, so he'll never have to have any other procedure done on his eyes.

Now David, had LASIK, which is a great procedure, especially when you're as young as he is.

But when he gets into his 50s or 60s, he'll have to have the same sort of lens replacement, cataract surgery, that Danny had.

So David will need additional surgery as he gets- - [Mark] He's gonna be looking for you again.

Will you still be practicing then?

- I'm hopefully gonna be well retired by then.

(Mark laughing) Hopefully.

- [Mark] It must have felt good to be able to help your cousins.

- You know, it was, it was great.

And once again, I did not understand how bad their vision loss was.

And their condition is so rare, I actually had to read up on it after they left.

I pretended like I knew what it was, and then I had to look it up when they left.

Because that's how rare it is, what they have.

And put feelers out to some of my friends that were doing research in retina to kind of remind me what are some things we can do.

And one of the things, that's just pretty simple, you can't just bring them in and check their vision.

You gotta sit them in a dark room, and let them adapt to the dark.

In fact, with Danny, I believe, we can't even use a lighted eye chart.

You know, you go to the eye doctor, and there's just a light.

He can't, it doesn't mean he can't see, but he can't see when there's a backlight to it.

So we had to figure out ways to actually check their vision, which I don't think had been checked before.

But it was very gratifying when we finally got him to be able to read the level for driving.

Danny especially, because he had not driven before.

And I'll never forget when his Dad, Jamie and I were in the room, and I thought the exam was done.

And we stopped everything.

And then Danny looked at the chart and said, you know, "D-A-O-F-N" or whatever the line was.

And it was the 20/40 line, and we all looked at each other, couldn't believe it.

(Mark laughing) And giving each other high-five, and I said, "That's all you need, "that's good enough to drive."

Pretty exciting moment.

- [Mark] No kidding, no kidding.

Thanks, Doctor.

- Yeah, thank you.

- [Mark] Real great.

Sherry Stahl, I complain about having to wear these because I'm of a certain age now and I need a a little help.

But, as much as I complain, I can't imagine what it must of been like for those boys, and other youngsters who are sight-impaired.

To be able to try to get through school, to get through every day, with all the hurdles that they have placed in front of them.

And you see them in school every day, you helped these boys through the earlier, and even the high school years, did you not?

- Well, yup, I started with them, when Danny was in kindergarten, and Dave, David, now I got their back, I always mistake the two.

When David was in kindergarten, and Danny was pre-K. And just stayed with them through Junior High, High School.

Sometimes working directly, sometimes just in the background making sure they had what they needed.

- [Mark] Yep, and they did okay in school, didn't they?

- Yeah, they did.

They worked hard, that was the thing.

They were able to put forth extra effort to maintain those grades.

But it was hard work.

Where a child with 20/20 vision would be able to see and read those passages and do the worksheet in a quick, easy manner.

They're having to put forth extra effort and extra focus on it to be able to get it done, about double the time.

- [Mark] Well, even, as we talk, I'm gonna hold up some of the things that they have to deal with.

You know, other kids don't.

These magnifiers, these kind of tools, which help them.

I mean, a telescope.

- That's for being able to see math problems on a board, or you know, sentences, or problems on the board that they'll be working with.

- Yeah so, I mean, they're already, like in time, they're already behind, because they're trying to find their tools while the other kids are already, you know, they focused in on things.

- And they're having to work with so much extra effort, that, and hold that focus, trying to decipher what it is they're looking at as it's moving around.

That the strain and fatigue builds on them.

So usually by the end of the day, or evening, their vision shift was just kind of done.

- Dr. Jones said, that you know, even as member of the family, he wasn't aware of how bad their vision was.

Because they were always, seemed to be able to do, and keep up.

So it's a testament to their, I think their character, and stick-to-it-ive-ness that they were able to just keep going and going and going.

- Oh, definitely, definitely.

- [Mark] I think one of them, or did both of them make, they were honor roll students, as well.

- They were good students.

- [Mark] They were good students.

(laughing) Well, that's gotta make you feel good, too.

- And really it did.

And you know, when I worked with them, especially in those very early years, that's what we were working on, is how efficiently we can get them to use their vision.

Helping them to get the tools they need to kind of get that, to be able to keep going and stuff.

- [Mark] And they did.

- Oh, they make me very proud.

- [Mark] Well, you should be.

Thanks to you and everybody that had a hand in it.

And now, they appear to be just fine young men, and they're really are doing much better than they ever- - Oh, very exciting.

I was able to, I kept contact with them over the years through Facebook and everything.

So the second I heard about the possibility of the surgery, and I followed them through the whole process.

And remind them, you better let me know what your acuity is, I wanna hear it, you know.

With each step of their surgeries I was following along, and just so excited for them.

- [Mark] Well thank you for visiting with us this time.

- Thank you.

- Well Jamie, you went through 24 years of probably wondering is this young man ever gonna have the kind of life he deserves?

And here it is, just recently you found out, that yeah, yeah, he is, feel pretty good.

- It feels wonderful, it's just been like a roller coaster with when they were little we actually had some doctors that you know, I would tell them, "Hey, I would love it, if he could someday get his license."

And they discouraged me from giving him that hope.

They actually said, you know, that isn't, unless there's some kind of major medical breakthrough, that isn't gonna happen.

So when Michael did that surgery, David wasn't as bad off as they said.

But when we got the news on Danny, when he took the eye test, and he saw 20/40, I just started crying.

- And you know, that does a lot for a young man.

There's a whole confidence thing, there's an independence thing.

And there's just the fact that knowing that, he can go on and grow.

You know, he's not hemmed in.

- Yeah, yeah, and he's you can tell he's gaining confidence.

You know, with, he's got a job.

He's finishing up at Lincoln Land.

He's just, everything is coming together for him.

He's written a book.

(laughing) - I know, we talked about that, we talked about that.

- So I'm just really proud of my kids.

- You should be.

There were probably times where it was really rough when they were growing up, and you're wondering how is this ever gonna work out?

- There was one night in particular.

Danny had a bad day, and I can't even remember now what it was.

Never complained about any of this stuff.

And... he just had a really bad day.

And he said, "I just want to be normal."

- [Mark] Yep.

- And it just hurt.

- [Mark] Just wanna be a normal kid, huh?

Yup, yup.

- But man, they just, you know, I'm so proud of them.

- [Mark] Well, y'all stuck with it.

Y'all went through a lot, together.

And it couldn't of been, without together.

You couldn't of done it, right?

You had to do it together.

- Yeah, yeah.

You know, their doctors, Dr. Blumthal, the last appointment we had with him, he was in really, really poor health.

And COPD, the doctors told him he only had like a month to live if he didn't get a double-lung transplant.

And so he's had a struggle, himself.

Five days after he got that news, they were able to get a pair of lungs for him, and he's doing great now.

You know, Michael, when he was born, he had the umbilical cord wrapped around his neck.

So he was, when he was born, he was actually clinically dead.

- Dr. Jones was?

- Yeah.

- Oh my God.

- And they brought him back to life.

So I mean, it's all of these guys, the doctors, my sons, it's all been, you can just kind feel God kind of, in charge of the whole thing.

And bringing it all together.

And there's an old song, it's "Lord don't move my mountain, "just give me the strength to climb."

- Well, thank you.

Young men, thank you.

Dr. B., thank you.

Thanks everybody for allowing us to do this.

Great story.

- Thanks, Mark.

(chuckling) - [Mark] Just think about it.

It must seem like a miracle.

All these positive things happening in one time, to one group of people.

Danny is working and driving now.

David's working.

They're sharing a house with two other friends in Springfield, so they're living independently and on their own and having a great time.

And they didn't really know whether life would ever be this good.

With another "Illinois Story" in Springfield, I'm Mark McDonald.

Thanks for watching.

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