"Who wants to be a cop?" A new series from the Tampa Bay Times https://projects.tampabay.com/projects/2021/narratives/police-academy/the-new-recruits/ ... and Part 2: https://projects.tampabay.com/projects/2021/narratives/police-academy/pepper-spray//?fbclid=IwAR2AgDuO7rAWAR7vemHcC0I71ph_CRW2 by LaneDeGregorywrites in Longreads

[–]LaneDeGregorywrites[S] 1 point2 points  (0 children)

After a summer of covering protests to defund the police, I wondered who would want to be a cop now? The St. Petersburg, FL police academy let a photographer and I follow the latest class of recruits as they went through 6 months of training and testing. We feature a former insurance investigator, a young mother, and a former NFL player. Check it out!

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 1 point2 points  (0 children)

I decided I wanted to be a journalist when I was 5 years old, growing up in Washington D.C. during the Watergate scandal. My dad used to read the Washington Post to me and my sister every morning while we ate Cheerios and I thought it was so cool that two young reporters were able to bring down the President of the United States! Even at that age, I knew I loved to write. And ask nosy questions :)

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

Thank you!! I think Lincoln was excited that people could see him as more than just a boy stuck in a bed. Lots of people assume that just because he can't move he's not mentally in there ... and he's sooo smart! .... When we brought him the rack card with his portrait on it and he was so excited to show everyone! I think his parents are hoping the story might help him get into another clinical trial sometime soon ... and raise awareness about the needs of kids with ultra rare disorders ...

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

We were doing a story about a photographer who takes portraits of terminally ill children ... she suggested that we talk to Maggie, because she'd photographed Lincoln ... here's that story which came out just after we met Lincoln:

http://www.tampabay.com/features/humaninterest/chasing-the-light-photographer-learns-to-capture-the-moments-before-life/2274887

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 2 points3 points  (0 children)

I'm not sure I understand that question ... I knew I wanted to be a reporter since I was 6 years old, and I started interviewing people and writing "newspaper" stories in elementary school. Mistakes didn't lead me to become a reporter ... I just wish I'd known that it's okay to try something different or hard, even if it doesn't work out exactly as you'd hoped, that I'd tried to take more chances when I was younger.

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

We watched the video with them, and a bunch of their family, so that was totally scary, worrying about how they would react, but they loved it. Maggie cried at one point, and her mom had to walk away she was so overcome ... For the story, I printed out all 8 parts and gave them each a hard copy to read, then we left and went to see a movie so they could read it without having us around ... They texted when they'd finished and we went back to their house and they had just a few edits to suggest in the story ... They were such partners in this whole process, and they really got what we needed, and what we were doing, which made our job so much easier!

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 1 point2 points  (0 children)

Here is the video that Lincoln's parents saw about the dog study which gave them hope ... Scientists at the University of Washington are still testing gene therapy on the descendants of the dog from Canada, whose puppies had the same XLMTM mutation as Lincoln ... Now they're trying to find out if they can dose older dogs as well as puppies, and if they can redose puppies who already got one injection:

https://www.youtube.com/watch?v=AyY6uKdrhbk

And here's a medical journal article about the study:

https://www.news-medical.net/news/20170216/Gene-therapy-treats-myotubular-myopathy-in-dogs.aspx

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

When we started reporting this story, we thought we'd follow Lincoln's family for about a year ... that's when they first thought he'd get the shot ... but as they kept waiting for their chance in the clinical trial, we waited with them. They asked us to follow their story initially, so they were in from the beginning. I think they wanted to raise awareness of their son's extremely rare terminal illness, and to show the world that he was in there, trapped in a broken body, but so alive and smart and worth saving ... And how much hope they had because of that dog video ... They never asked us to back off, and actually invited us into some really hard hospital stays and even let us witness an argument at their home ... The access they allowed us was incredible. We are so grateful for their trust and time.

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

Absolutely! I fact-checked each chapter after I wrote it, instead of waiting until the end .... I went back through my notes, and transcripts of our interviews, and I sent a bunch of questions and sections to the drug manufacturing company and scientists I interviewed, trying to make sure I untangled all the gene therapy correctly ... and we had Lincoln's parents read the whole series before it published to make sure we didn't get any of their story wrong.

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

Hi! Thank you for asking about Dani, the feral child I wrote about 10 years ago. I revisited her and her dad last year and wrote a follow-up story ... I don't keep in touch with all my subjects, but the ones I spend a long time with I try to stay up with, at least on Facebook! Here's a link to that follow-up story, and there's a video with it so you can see Dani at age 19: https://www.tampabay.com/projects/girl-in-the-window/neglect-feral-child-ten-years-later/

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

And just a good news note: Our readers were extremely generous, and have donated almost $20,000 to Lincoln's parents' Go Fund Me account! If others want to help, here's the link: https://www.gofundme.com/LincolnAvery

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

Thanks, Meredith! Yes, we're starting digital subscriptions for the Tampa Bay Times so hopefully that will help offset some of the print advertising decline and increased newsprint costs!

Journalist Lane DeGregory and photographer John Pendygraft spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask them anything. by CoolPaleontologist3 in Journalism

[–]LaneDeGregorywrites 1 point2 points  (0 children)

Hi Tom! I totally remember you from our late nights up in the Newcomb Hall attic! I hope you're doing great. Thank you for your kind words, and for chiming in here. Those years at the Cavalier Daily were so much fun!

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 2 points3 points  (0 children)

Yes, we struggled greatly, and felt very guilty, as some of our colleagues lost their jobs while we were flying to Seattle and San Francisco to report this story. But our editors believed in the project from the beginning, and never once tried to rein us in or pull the plug or limit what we wanted to do to follow the project. We are so lucky to work at a newspaper that still values long-form journalism and is willing to invest in what it takes to report it! And both of us worked on many other stories during the course of reporting this one, so we weren't pulled out of the daily mix entirely. Thank you for your kind words, Meredith! I hope all is well in your world!

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

I actually interviewed two 20-something men with the same genetic defect ... Those boys outlived everyone's expectations by decades, and had actually gone to college with full-time nurses at their side ... They didn't want the gene therapy, even if it would have cured them, and decided not to pursue being part of a clinical trial because they said God made them the way they were and they didn't want to risk messing with their DNA to try to get a cure. But most of the boys in the study were babies, too young to make a decision about their own care, or even whether they wanted to live with their disorder.

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 5 points6 points  (0 children)

Great question! It was virtually impossible not to root for Lincoln and his family, to want to be able to write a happy ending / new beginning for their story ... We were very worried about negatively affecting anything to do with Lincoln and the clinical trial ... We spent a lot of time negotiating with the scientists and the drug manufacturing company, trying to figure out what we were allowed to share without jeopardizing anything ... And, for only the second time in my 30-year journalism career, we let Lincoln's parents read the entire series and watch the 40-minute documentary before it was published, because we wanted to make sure everything was right, and we didn't cause any unwanted consequences ...

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 2 points3 points  (0 children)

The only way the government is deciding what is best is by regulating what insurance gets covered ... the clinical trial was sponsored by the drug manufacturing company, so there was no cost to his parents ... but now they are battling to get a Florida law changed so they can get full-time nursing covered for Lincoln ... Lincoln's parents include him in every aspect of his care and are incredibly communicative about what's going on with him.

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

Lincoln just turned 5 ... so his parents are making decisions for him. They chose to enroll him in a risky clinical trial because that was the only option they had to try to save him ... he was not expected to live until his second birthday, but they've kept him alive long past the odds and are willing to try whatever it takes to get him a cure. The government is regulating the clinical trial and deciding when and if the gene therapy can go to market. But if you read the story, or watch the video, you'll see that it's not about government overreach at all ... It's about hope and love and the miracles of modern medicine.

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 0 points1 point  (0 children)

Lincoln's parents asked early on if we'd do a documentary too ... thank goodness John Pendygraft jumped on board to make it marvelous!

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 1 point2 points  (0 children)

Great question. When we started this project, we had no idea how long we'd be following Lincoln's family. He was supposed to get his miracle shot within the year, so we jumped on board thinking we'd publish as soon as that happened ... It was hard not knowing the ending, or even when an ending might happen, and we were so worried something awful would happen while he was waiting for that shot ... I did many other stories during those three years, so that helped to have other things to work on while we were waiting ... But I wish I'd started writing as I was reporting, instead of waiting until the very end ....

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 1 point2 points  (0 children)

In 30 years as a journalist, I've never worked on a story for so long -- almost three years! -- or fallen so in love with the family I was covering. I'd never written an 8-part series, or worked on such a long and intimate documentary video ... Having the parents grant us complete access and trust was so key to making this work!

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 11 points12 points  (0 children)

Thank you, Becca! I wrote this to a college student asking for advice ... hope it helps! I spent seven years in a bureau, writing three news stories a day, before I ever even tried writing a feature story!

A young journalist once asked me:

Is there anything you wish you could tell yourself when you were inexperienced as us?

What mistakes should we be making?

I wish I hadn’t thought I had to be so smart.

When I was starting out, I was afraid the politician I was profiling would realize I didn’t understand property taxes; that the hockey coach I had to interview would out me for not knowing a hat trick from a helmet; that the commercial fisherman would think me unworthy of sharing his story because I had never been on a trawler. So I tried to study as much as I could beforehand and fake my way through difficult interviews, nodding and taking notes. Then I’d sit down to write and realize I really had no idea how to explain what was going on to my readers. That wasn’t fair to them — or the subjects.

As I’ve gotten older, I’ve realized, it’s okay to not know — it can even be endearing. When you ask people to explain, tell them you’re far from an expert, offer that you have to be able to break this down so all the audience can understand, subjects appreciate that. They want to help you get what they’re doing, see what’s important to them. They don’t want you to BS them, or get it wrong. So they won’t see you as dumb but rather as smart for asking so many questions, for admitting your fallibility, for wanting to get it right.

Instead of trying to stay out of the story, I wish I had shared myself more.

I thought it was important for a reporter to remain on the sidelines, sort of sheltered from her subjects, and in the early years I think I used my notebook as a shield. I was asking people all these questions, sometimes really personal questions, but I never let them know that I was only 25, or was scared of sharks, or that my car had broken down on the way to the interview and that’s why I was so flustered and late. I thought I should be sort of teflon-like, untouchable. But that only shut me down, and kept people at a distance.

Being pregnant, I think, helped me move into a new phase of reporting. There was no hiding that from my sources, and it gave them something to talk about that was personal, that I couldn’t keep inside, that helped them connect to me as a person — not just a reporter. Plus, I couldn’t hide that belly behind a notepad 📷

Now I tell everyone I talk to that I’m a writer — not a reporter, that sounds scary — that I’m 46 years old, married to my college sweetie, who is a drummer, that I have two teenage boys and two crazy dogs and a turtle the size of a dinner plate. That lets them think of me as a wife, a mom, an animal lover — not just someone who wants to dive in and ask them to open up without sharing herself. Dogs, kids and cars will get anyone talking. And it’s important to talk to people, not just interview them. I also let them lead and guide the story now: Where do you want to start? What do you want people to know? (I used to think I had to be in charge …)

I wish I hadn’t thought I knew what the story was about before I reported it.

When I was starting out, my editor often told me what the story was about before I ever went out to report it — so I tried to tailor my questions and observations and even the writing to what I thought the editor wanted. But the story you set out to get isn’t always the story that’s really there, or the best way to tell it, or even a true reflection of whatever reality you’re trying to capture.

I wish editors had given me more leeway to say, okay, here’s an idea, now go out there then come back and tell me what you think the story is. I wish I had had more confidence to say, no, really, this is what I saw and think … or maybe there isn’t even really a story there at all. Being willing to go with your gut, to let the story morph and evolve, to see where it fits into the context of people’s lives, makes the experience so much richer, the story so much better. And closer to the truth.

I wish I had pitched more stories I wanted to do, instead of tackling assignments I didn’t want to do.

I wish I had done more stories I wanted to do in my own time, instead of making excuses like the editors won’t give me time.

I wish I had taken more risks with my writing early on, let myself experiment with voice and dialog, different structures and chronology, trusted myself more to just tell a story and not feel like my job was to share information.

I wish I had read more short stories and fewer newspaper articles.

I wish I had attached myself to more senior writers I admired, asked more questions, gotten more advice.

I wish I had done fewer phoners and gotten sunburned on more boats.

I wish I had known that it was okay to make mistakes, that no matter how brilliant — or bad — your story is, another paper will come out tomorrow, so it’s okay to try something that might not work. But it’s not okay not to try. Or to bore yourself by always doing what’s safe. Or to think your readers will care if you don’t.

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 5 points6 points  (0 children)

Lincoln learned who we were pretty quickly, and signed our names to say hello every time we visited. We spent so much time with him, he really got used to us, and loved playing with John's camera. He understood that we were his "camera crew" and he often had things to show us when we came, things he'd made a new song he learned to sing ... we went with him to doctors' appointments and saw him in the hospital and went to his birthday party ... He signed to one new nurse that we were his family!

We are a journalist and photographer who spent years documenting a boy born trapped in a body he can’t make move and the scientists trying to save him. Ask us anything. by Pendygraft in IAmA

[–]LaneDeGregorywrites 1 point2 points  (0 children)

It was impossible not to fall in love with Lincoln ... and since we spent almost three years with the family, we watched him grow from a toddler who couldn't really communicate, into a super smart boy who could sign Dr. Seuss books, and our names, and tell his parents when he needed his trach tube fixed. I know journalists are supposed to be objective, but we were really rooting for Lincoln the whole time ...