Laurie Kelley

Our Hemophilia Cyborg!

We often refer to our guys with hemophilia as superheroes. And so many truly are: whether they survived exposure to HIV in the 70s, or overcame an inhibitor, or live with an inhibitor, or have had surgeries or many surgeries. Their endurance, their tolerance for pain, their ambitions are heroic.

But how about a guy with hemophilia who helps create a superhero?

Meet Morgan Hampton, a 31-year-old with hemophilia, who astoundingly creates the text for DC Comics’s character Cyborg. Personally, I loved Cyborg from the 2021 movie “Justice League.” What a great job to have! In addition, Morgan is a third-year student of Writing and Producing for Television at Loyola Marymount University in Los Angeles. He’s working on his Master’s Thesis, an animated film about a young man with hemophilia: “The Boy in the Blue Helmet.” We’re helping to fund this project, which I know will be wonderful. Read our Q&A with Morgan below and be inspired!

When did you first know you wanted to be a writer?

The first thing I wanted to be as a child was a Power Ranger.  And I wanted that for an embarrassingly long time. In hindsight, I think I always knew that I wanted to be a writer. I started making my own comics when I was eight. But I didn’t internalize that I wanted to write as a career until I got to college. Once I realized that, everything became clearer because I suddenly had a singular goal to strive towards. 

Have you always been drawn to the superhero world? Or was this an opportunity that came out of the blue?

Yes, definitely. Comics, specifically superhero comics, are the only reason I read as a child. Novels couldn’t keep my attention, but comics had really cool pictures that kept me very engaged. 

As I got older and paid more attention to the stories and the characters, superheroes presented an escape to a world where people with traumatic backstories, and devastating injuries could overcome that and use it to their advantage, saving the world and their communities along the way. Seeing that as a young person with hemophilia was very important to me.

What significant challenges did you face as a child?

The challenges I faced as a child were more mental and emotional than physical, I’d say. I’m a mild hemophiliac, and I was born in 1993, right around the time they started to make major breakthroughs in medication. Oddly enough, the bleeding and needles and medication has always felt normal to me. Because hemophilia is something you’re born with, this is all I’ve ever known, so there wasn’t any adjustment I had to make. The adjustment was trying to fit my very not “normal” life into a normal one.

My uncle also had hemophilia. He was one of the many with hemophilia who contracted HIV/AIDS in the 80s, ultimately succumbing to it in the 90s.

My mother had grown up watching my uncle struggle with hemophilia during a time when he did not have the same safety nets that I have had in my life. Informed by what he went through, my mom wanted to create as safe an environment as possible for me as any mother would.  But it was hard for me to understand why I couldn’t go out and do the things my friends got to do. I didn’t like feeling different, and that was probably the hardest part for me. So I was stuck at home watching television, reading comic books, and playing video games. I know that doesn’t sound like the worst thing ever, but when you’re told you can’t do certain things over and over again, it starts to bother you. 

How does it feel to be a writer for a great character like Cyborg in the DC Universe? What does Cyborg represent or mean to you personally?

Writing Cyborg is truly a dream come true. He was one of my favorite superheroes growing up, and to get to add to his mythology is the honor of a lifetime. No one ever breaks it down this way, but Cyborg is a differently abled person. He’s got bionic appendages. Sure, those bionic appendages grant him superhuman abilities, but at the end of the day, he’s a person that has to learn how to navigate this world in a different way because of his physical circumstance. That’s something that I’ve always resonated with. 

Now I get to add a little bit of my own sensibilities, living in the world with a bleeding disorder that makes me have to navigate life differently, and apply that to one of my favorite characters. It’s the best feeling in the world. 

How do you hope your film “The Boy in the Blue Helmet” will be understood by young people with hemophilia? What do you hope the message will be?

My film is an attempt to capture the emotional truth of what it feels like to grow up with hemophilia. Aspects of it are surreal, and off-kilter because honestly, that’s what having hemophilia feels like. I can twist my ankle and watch it swell to the size of an orange in minutes. To medicate, I have to poke myself with needles. Some people use ports. That’s inherently surreal. 

So my goal for this film is to make hemophiliacs feel seen and heard. We aren’t represented much in film and television and when we are, it isn’t usually an accurate representation. And for everyone else, I want to share what our perspectives living with hemophilia looks like. We are constantly in pursuit of peace, of stability, and often through just trying to make sure we are as safe and secure as possible, the people that we love and care about can lose sight of the fact that we just want to feel normal.

Where do you think these amazing career opportunities will take you in later years?

My hope is to carve out a consistent creative career where I can work as a writer in many mediums whether it be film, television, comic books, anything really. I just want to write, and to live comfortably while doing so. I’m lucky enough to have found what I believe to be my purpose. So I just want to keep feeding into that as much as possible. 

What message in general do you want to give to young people with hemophilia?

Something my mom always used to tell me when I would get down about my hemophilia and the limitations it had on my life is that everyone has something that they are dealing with. That made it easier to cope with my circumstance, knowing that others had their own personal things that they were going through. It made me feel less alone. 

Not only is it okay to be different, it’s cool. It’s not always going to be easy, but you always come out stronger on the other side of adversity. 

Listen and watch Morgan as he describes his project, and contribute if you can!

Also, Morgan’s Cyborg series will be collected into a book that comes out April 2, 2024. Preorder here!

Lessons from Rudolph

Santa notices Rudolph’s “nonconformity”

We just finished putting up and decorating the Christmas tree, and I was surprised to see so many ornaments about Rudolph! It seems I’ve been collecting them through the years. I grew up in the 1960s, and before CGI, “Rudolph the Red-Nosed Reindeer” was the best TV holiday show for kids, in my opinion.* In many ways, it still is. Stop-motion animation has always fascinated me. Apparently, it also fascinated a guy my age by the name of Tim Burton, who, adoring “Rudolph” and how it was made, grew up and fulfilled his dream. He went on to create the classics “The Nightmare Before Christmas” and “The Corpse Bride”!

This got me thinking…

Christmas is a time to celebrate the birth of Christ and all it entails: gift-giving (mimicking the gifts from the Three Wise Men), charity, peace, family, love.

But in art, it seems to be a time to recognize that marginalized people, especially those with disabilities, should have special attention and care.

Think of Tiny Tim, who I’ve written about before. Birthed from Charles Dickens’ fertile imagination, born in Victorian England, he was crippled at a young age, and the entire story, “A Christmas Carol,” revolves around showing him love and compassion. The antagonist is his eventual benefactor—Scrooge. Despite his wealth, Scrooge was crippled too, emotionally. The story develops to show how Scrooge was cured of his antisocial pathology, and how Tiny Tim was cared for. I’m convinced Tiny Tim had hemophilia!

And what about Rudolph? The Rankin/Bass show had the narrator, a snowman voiced by Burl Ives, calling his shiny red nose a “nonconformity.” The show had a lot of great humor. Rudolph was different. He had a problem. But he had a bigger problem when his parents tried to disguise his nose, to make him like the other reindeer.

What a great story! Rudolph meets up with an elf, Herbie, who also doesn’t conform to society’s conventions. Together, they set out to see the world, and end up on the Island of Misfit Toys, where all the toys have some “disability,” which could simply be translated as, “doesn’t meet society’s definition of perfection.”

“We’re a couple of misfits”: Christmas is about accepting those who are marginalized

In the end, Rudolph convinces Santa to find homes for all the misfit toys. Tiny Tim helps Scrooge, who then helps Tiny Tim. And Rudolph, of course, saves Christmas! The moral of the stories is that different is good. And we all need to be understanding, tolerant, helpful and inclusive.

Even Herbie. He got a job as the North Pole’s first dentist.

Happy holidays!

* Rankin/Bass, as Videocraft International, contracted with Tokyo’s pioneering Tad Mochinaga for the stop-motion “Animagic” animation. Scripts, pre-recorded voices and sounds made their way to Japan, and an estimated 82 puppet figures were created.

The Beatles’ Brush with Hemophilia

What do the rock bands the Doors, the Beatles and Pantera have in common?

December 8, just two days ago. It’s the birthday of the Doors frontman Jim Morrison (1943), and the assassination dates of both John Lennon (1980) and Pantera founder and guitarist Dimebag Darrell Abbott (2004). A very famous date in rock history. I’m a huge Doors fan and consider them my favorite group ever. In fact, I was to have seen last night our local Doors tribute band, “Through the Doors,” with the amazing Ernie Potter as Morrison, but my friend was ill and we canceled sadly. I never miss a chance to see the Doors tribute bands.

Interestingly, I learned back in 2011 that Stephanie, a hemophilia mom I’ve known since 1989, one of the first 50 who wrote to me for my book Raising a Child with Hemophilia had a connection to the Doors. Her husband Art is good friends with guitarist and songwriter of the epic “Light My Fire” Robby Kreiger. He also happened to write me favorite song “Touch Me.” Thanks to Art, I’ve met Robby (speechless!) several times now.

Anyway, while never a huge Beatles fan, a learned through our dedicated archivist and researcher Richard Atwood of North Carolina, that the Beatles had a brush with hemophilia!

In 1964, at the height of Beatlemania, on their first tour of the US, the lads from Liverpool were the main attraction at a small fundraiser for the Hemophilia Foundation of Southern California. This is the equivalent of having Taylor Swift show up for a private fundraiser of a few hundred for hemophilia.

The fundraiser was held on Monday, August 26, at the home of Alan Livingston’s mother-in-law. Livingston was the president of Capitol Records, and had a son, Peter, with hemophilia. He had just signed the Beatles to Capitol Records. Tickets cost $100 per adult and $25 per kid $25. Also present was future actress Peggy Lipton of Mod Squad fame; she fell in love instantly with Paul McCartney, passed him her number and they became lvoers—at least briefly. Megastars Tony Curtis, Lloyd Bridges, Kirk Douglas, Stan Freburg, Eddie Fisher, John Forsyth, Edward G. Robinson, Frank Sinatra and Dean Martin also attended.

Dean Martin’s daughters write in their memoir, “… we all had a chance to line up, say hello, and shake their hands. I didn’t wash mine for a week. The British legends seemed a bit bashful, and when they spoke, their Liverpool accents were impenetrable. John did most of the talking and everyone was laughing at what he said, but try as I might, I could barely understand a word.”*

Attendance was limited due to security issues. Guests are served lemonade and cookies, then introduced to the four Beatles who sat on stools under a Deodar tree.

It was probably the most successful fundraiser that HFSC ever had. Brian Epstein, genius manager of the Beatles, personally wrote a check for $10,000 (the equivalent of $98,610 in 2023 dollars); and they raised much more. Alfred Dubin, the president of HFSC, and father to hemo-hero Corey Dubin, looked very pleased when accepting the check in the official photo. Yet the dollar amount was nonetheless limited by attendance set at 400 guests —a number imposed by the police for security purposes.

Now… anyone know Taylor Swift?

See a few photos of the event: https://lamag.com/uncategorized/how-the-beatles-really-ended-up-at-a-garden-party-in-brentwood

Thanks also to Paul Clement for his additional research on this topic!

*Deana Martin with Wendy Holden, 2004, Memories Are Made Of This: Dean Martin through his daughter’s eyes. New York, NY: Harmony Books. 300 pages.

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