By Cathy Miller

FAST FACTS

Name: Jackson Kennedy
Age: 10
Grade: 5th
Favorite subject: Math
Favorite sports team: Philadelphia Eagles
Favorite movie: “Gettysburg”
Favorite video game? Minecraft
Favorite Halloween candy? Reese’s Peanut Butter Cups

THE TIMELINE

• May 2009: Jackson Kennedy is born.
• Fall 2009: His mother, Mary Ann Higgins, notices he is more focused on looking at lights than faces.
• November-December 2010: Jackson’s first eye doctor appointment. He is prescribed glasses but the doctor suggests Jackson might be autistic. Mary Ann brings Jackson to a developmental pediatrician but is unconvinced that her son has autism. She also looks for recommendations for a vision specialist.
• 2011: A low vision specialist suggests Jackson has Lebers congenital amaurosis (LCA), an inherited, progressive blindness. They are referred to a geneticist, who applies for genetic testing, but insurance denies the request multiple times.
• 2012-2016: Jackson learns to use a cane and to read Braille.
• October 2016: They visit Alex Levin, MD, an ocular genetics and pediatric ophthalmology specialist at Wills Eye Hospital in Philadelphia.
• January 2017: After being denied again for genetic testing, a Wills Eye representative gives them good news: A corporate donor will pay for the testing.
• October 2017: After eight years, the family finally receives an official diagnosis of LCA RPE65.
• December 2017: Luxturna, a single-dose surgical injection treatment created by Spark Therapeutics – the donor that paid for Jackson’s genetic testing – is approved by the FDA.
• May 2018: Netflix begins filming Jackson and his family during treatment.
• July 2018: Luxturna is administered to Jackson in two outpatient surgeries, one for each eye, just two weeks apart.
• Fall 2018: Jackson starts fourth grade.
• Oct. 18, 2019: Netflix’s docu-series, “Unnatural Selection,” is released, featuring Jackson Kennedy’s story.

AN INTERVIEW

Sitting under the pavilion at Meadowbreeze Park in Washington on a beautiful autumn day, I was meeting Jackson Kennedy, of Washington Borough, for the first time. The 10-year-old fifth grader field all kinds of questions, very much unruffled by all the fuss. Accustomed now to the spotlight, he was recently featured in a Netflix docu-series called “Unnatural Selection,” which presents an overview of genetic engineering and therapies. The show, in part, chronicles Jackson’s experiences overcoming a rare genetic disorder that would have led to total blindness.

With his mom, Mary Ann Higgins, a para-professional aide in special education classrooms at WHRHS, and stepdad, Dirk Higgins, a 911 dispatcher for Warren County and the Washington Borough Fire Chief at his side, we dove in:

Cathy Miller (CM): First of all, how are you feeling?

Jackson Kennedy (JK): Good. Good.

CM: Having had surgery on both eyes a little over a year ago, are you still adjusting?

JK: A little bit.

CM: What’s different now than before surgery?

JK: I can see at night a lot better than before I had the surgery … I could see pretty good in the daytime, but at night pretty much all I saw was the streetlights.

We moved our seats because the sun was bothering him a little. Of the bright sunshine in his eyes, Jackson cheerily quipped, “That was never a problem before!”

CM: Do you have to wear special sunglasses now?

JK: No. Everything is normal. [Nowadays, he wears glasses just for reading.]

CM: You were nine years old when you had the surgery. How did you feel going into that?

JK: Excited. But I was also really nervous knowing what was going to happen. Knowing I was going to be asleep pretty much the whole time, I was OK with that. I was fine with NOT feeling it.

CM: Was the second surgery easier?

JK: Yeah, because I kind of knew what to do.

CM: Did the procedure involve a lengthy hospital stay?

Mary Ann Higgins (MAH): No, it was an outpatient procedure, believe it or not. He was admitted in the morning and had the procedure. The procedure itself took about 90 minutes and then they brought him to a recovery room where he had to lay pretty much flat on his back for four hours to let the Luxturna absorb into his retina.

Jackson wanted to stress that it was FOUR HOURS in the recovery room!

CM: Was it difficult to lay on your back that long?

JK: Yeah, because I’m a child and I’m impatient.

CM: Was there any discomfort after surgery?

JK: No, not really. I just had a patch over the eye, and I was not used to that. I wasn’t used to not being able to open my eye. I wore a patch the night after surgery and we took it off the next morning … As soon as I took the patch off, everything was extremely bright. When we were walking down the sidewalk, in the daylight, to get food, even when I had my eye closed, it was still a lot of pain because it was so bright. But now I’m used to it, I don’t have to do this [squints and shields eyes] anymore. It maybe took a month for me to be able to open both eyes … Honestly it felt almost like a sting in the eye. When you get soap in your eye, that’s what it felt like.

CM: There was a drug developed specifically for LCA RPE65, used in conjunction with the surgery?

MAH: Yes. Luxturna. It had just hit the market, FDA approved unanimously. They inject this drug behind the retina and then it basically absorbs into the retina. There’s a bubble of liquid that stays there for a few days, so Jackson’s vision was very blurry at first.
JK: I saw the bubble.
MAH: Several times he said he felt like he was underwater. It takes a few days for it to absorb. But once it absorbs, you start seeing better.
JK: And I could see when it was going, it kept getting smaller. I couldn’t really tell where the bubble was, but it had a black outline. It was like a black circle that was blurry in the middle. I could see outside of the bubble fine. After a couple days, it was pretty small. And then it went away.

We talked about stitches:

JK: Actually, they didn’t put stitches in my eye … I don’t think…
Dirk Higgins (DH): Yes, they did.
JK: Oh, the dissolving ones?
DH: You didn’t even notice they were in there.
JK: I don’t think they were blocking my sight, I think they were behind my skin. Me saying that sounds very creepy!
DH: They were very tiny.

CM: Are there any restrictions on what you can do now?

JK: No restrictions. There used to be. After the surgery, I couldn’t put my head under water. I couldn’t get my eye wet because it would wash the stuff out.
CM: What stuff?
JK: The stuff they put in my eye.
MAH: They were worried about him getting an infection. There was still a hole. It had to heal.
DH: It’s worth mentioning that before the surgery Jackson was doing Braille and walking with a cane. He was entirely reading and writing in Braille, very fluent. He had a full-time aide in school. And now, he’s reading books, reading and writing in print, enjoys reading. Doesn’t use a cane.

CM: So is it all now second nature to you?

JK: It’s pretty different. I’m really used to it now.
MAH: There are still times when we have to remind him ‘you can see now. Use your eyes!’
DH: One of the families that we met through one of the [support] groups said, ‘you have to discipline yourself and teach yourself to use your eyes.’ For the first nine years of Jackson’s life, it was, kind of, feel around for things. It’s a learning curve.

CM: Mary Ann and Dirk, was this the first time he actually SAW you?

MAH [to Jackson]: You knew what we looked like?
JK: Yeah, kind of.
MAH: What did you think when you saw our faces really clearly?
JK: You looked a little different but not that much.
MAH: Hopefully I looked better.
JK: You did.

CM: What other firsts can you recall?

DH: There’s a story I like telling. It was probably a month after his surgery. We were in the kitchen eating lunch. He was sitting next to me and I could feel him staring at me. So I said, ‘What’s up, buddy?’ Jackson said, ‘What are you doing?’ I said, ‘I’m eating my lunch.’ Jackson said, ‘No, no, with your face, with your cheeks, what are you doing?’ I said, ‘I’m chewing.’ Jackson said, ‘That’s what chewing looks like?’ And he completely lost it, rolling on the floor, laughing his head off. You never realize your face moves when you’re chewing!
MAH: And the first time Jackson saw ice cubes in a drink, that was exciting. He didn’t know they were clear. He knew they were there, he knew there was ice, he knew what it sounded like in the glass, but then to actually see it and touch it. It was such an experience. Another time he was getting a shower, right after surgery, and he came out and said that with his one eye, the one that had the surgery first, he could see the water coming out of the shower head for the first time. He was never able to see the water.
JK: I was able to see the water in the swimming pool, but not running water, the detail of it.

CM: Mary Ann, Dirk, how did you react to this?

MAH: I just wanted to take him everywhere. ‘Look, this is where pumpkins grow!’
DH: It was almost to the point of annoyance for him. ‘Can you see this, can you see that?’ ‘Yes, I can see it!’ I don’t think that will ever get old.

CM: You’re featured in “Unnatural Selection,” a documentary series on Netflix about your experience! I understand the Netflix crew followed you everywhere, all day long, with a camera.

JK: Everywhere I walked, they were right behind me. I had a microphone in my pocket. I had it hooked up to my chest. I actually had it taped onto my chest. Even during my birthday party, they were there. I had to wear [the mic] most of the time. … They’d film me for one day and then leave. Then maybe the next month they’d come back.

CM: They didn’t move in with you?

DH: No. Some days it felt like that. It got to the point they’d help themselves to the refrigerator. That’s when we knew that we were all kind of family. We told them they were guests in the house, and they could have anything from the refrigerator.
MAH: They started filming in May 2018, the weekend before Jackson’s ninth birthday. He was in a school play – he played Jafar in “Aladdin.” It was a busy few weeks between birthday parties, the school play, losing a tooth, and preparing for surgery in July.

CM: How did you end up working with Netflix?

MAH: We posted a video on Facebook of me telling Jackson about his official diagnosis … We made the video public, most of our stuff is private, but friends and family wanted to share it. Somehow, in January or February of 2018, I was contacted through Facebook by one of the Netflix producers, and I naturally thought, ‘yeah, ok, sure you are –  we’re in small-town Washington, there’s no way anybody is going to want to come here.’ I just didn’t believe it. So we did a little research and found out he was legit.

CM: Did you sit in your living room and watch it on television?

DH: Friday night we had a viewing party for all our friends and family. We set up a projector and a big screen, popped some popcorn. We skipped around and watched all of Jackson’s parts.
JK: I’ve seen pretty much all my parts in it. I lived it. I don’t have to watch it. I already know what happened.

CM: Tell me about the show.

MAH: They [Netflix] talked to some biohackers, basically people working out of their sheds and their garages. One actually is a doctor, he used to work for NASA. Now he’s doing all this, creating these potential gene therapies to help people with anything from HIV to Alzheimer’s.
DH: These people are watching videos on YouTube and ordering stuff online. Of course there’s going to be controversy behind that. A lot of “Unnatural Selection” is talking about people who created gene therapies in their homes for nothing almost. Yet the pharmaceutical companies that are creating them are charging an astronomical amount. Jackson’s drug alone was $850,000. We’d be holding a lot of spaghetti dinners at the fire house, some car washes, too, if that wasn’t covered by insurance!

CM: How did approval for the surgery go?

DH: I think the week before his surgery, it still hadn’t been approved by insurance. We had the dates and everything was ready to go.
MAH: It was almost to the point, if they didn’t get the approval, they were going to have to push the surgery back.
DH: It’s kind of crazy. You have a gene therapy that can help this 10-year-old boy, and all these other kids, and some adults, but you’re holding it back because of money.
MAH: Which is one of the points that they make in the series, that’s just one of the things. With all this technology, what’s next? There’s people obviously for it, and then there are people who are against it. What should we be doing? Should we be doing any of this?

AN INTERVIEW IN SUMMARY: THE SKY’S THE LIMIT

CM: What is your favorite thing about Halloween?

JK: Haunted Hayrides. I also like that now I can trick-or-treat without holding anyone’s hand and I can see the candy in the bowls.

CM: You’re an athlete?

JK: Yeah. I wrestle with Washington Y Wrestling. It’s been five years.
DH: Wrestling was nice because it’s one of the few sports that’s good for visually impaired children. Jackson was limited as to what he could do, but thank God, he took to wrestling and wrestling took to him. It’s kind of our second family there. … That’s the thing. If it was up to him, he would have done everything, but as his parents, we had to look at the safety side of it. We’re not going to put him on a baseball field where he can’t see a baseball coming right at him.
JK: Otherwise I would probably be playing every single sport in the world. I like sports.
MAH: He’s very active. Even prior to surgery, he was on his bike, he was on his scooter, he was playing basketball in the yard or here at the park, he was on the monkey bars.
JK: I used to beat Mom at basketball.
MAH: He’s always been very active. And now, the world can’t stop him!

CM: If you could travel anywhere, where would you go?

JK: I want to be an astronaut when I grow up. Go to Mars. I want to be the first person on Mars. When I think about going to Mars, I picture what I have seen on TV. It has red toxic sand and it is cold. My mission would be to go to Mars, collect data and make it back to Earth in one piece. … Some people say that aliens do live on it because they’ve seen very weird, odd things on it. Like on top of Mars’ volcanoes. I don’t think aliens are really friendly. [to Dirk] Remember that thing we watched the other day about the alien ships and the Air Force bases? And that they found an actual alien base on the backside of the moon? It wasn’t manmade. We couldn’t have made any of that stuff. There has to be aliens. There has to be!

If you would like to learn more about Jackson’s story, you can join the “Jackson’s Journey” facebook group, or watch “Unnatural Selection” on Netflix.

If you would like to suggest someone to be the next person of the week, please reach out to Cathy at info@insidewarren.com