Daniel DeFabio, is dad to Lucas, who had the rare disease Menkes Syndrome. Here he shares his thoughts on Madame Web—a superhero film with RARE parenting at its heart

Written by Daniel DeFabio,The Disorder Channel

If you’ve seen reviews of Marvel’sMadame Web(2024), it was likely a negative review. This review is different. Madame Web is a rare disease film. (Spoilers ahead!) The film begins in 1973 with a mother-to-be on a quest in the jungle of Peru to find a rare spider which has a venom which may cure many diseases. What we don’t learn until an hour and twenty minutes into the film is that this mom, Constance Webb (Kerry Bishé of Halt and Catch Fire), is a rare disease mom willing to do anything to find a cure for her child.

Her daughter Cassie was diagnosed in utero with myasthenia gravis and like so many rare disease moms the doctors told her there was nothing to be done about it. There is no cure and the doctor has little else to offer besides tissues for her tears. And also like so many rare disease moms, Constance does not accept that answer. “I’m unwilling to accept a diagnosis of helplessness,” she tells her doctor. Instead she sets out to find the cure herself. She is a mom who doesn’t “have time to rest.”

Myasthenia gravis (MG) is an autoimmune disorder in which communication between nerves and muscles break down, and the skeletal muscles grow weaker.¹ The doctor in Madame Web describes it as a “genetic neuromuscular disorder. Life expectancy varies.” However, according to John Hopkins Medicine, “the cause of myasthenia gravis is unknown and there is no cure, but early detection and prompt medical management can help people live longer, more functional lives”.¹

Onset of symptoms can be at any age, but MG is more frequently seen in young women (age 20 and 30), and men aged 50 and older¹—the legendary actor Laurence Olivier had myasthenia gravis.²

Myasthenia gravis affects the voluntary muscles, especially those that control the eyes, arms, legs, throat and mouth.¹ Visual problems can include drooping eyelids and double vision. Studies have found some people with MG have memory difficulties, cognitive and psychosocial issues.³

I can imagine the scriptwriters taking an imaginative leap from the real symptoms of myasthenia gravis to land on the fictional ability of pre-cognition we see in Cassie, following a well-established comic book trope of turning a disability into a superpower.

Part of what is called the Spider-Verse, the world of films connected to Spider-Man comic book characters, Madame Web applies a meaningful twist to the most important line from Spider-Man lore. “With great power comes great responsibility” is probably the most famous line from comic books. It’s an especially important concept for a teenage Peter Parker to grapple with. But in Madame Web we hear instead: “When you take on the responsibility, great power will come.”

“When you take on the responsibility, great power will come.”

This struck me as very apt advice, not just for the title character Madame Web/Cassie Webb (Dakota Johnson of Fifty Shades of Grey), but for her mother. It’s reassuring advice for any new parent and especially needed advice for a rare disease mom or dad wondering how they will handle the challenges of complex medical care. In our more mundane lives off-screen it boils down to something like: “You’ll be surprised by what you are capable of when you have to do it for someone you love.”

In my own experience as dad to Lucas, who had the rare disease Menkes syndrome, many people were kind enough to say things like “You’re doing an extraordinary job caring for him.” And while the compliment was nice, my reaction was dismissive. I considered what my wife and I did to be very ordinary. We were simply caring for our child, following the instincts everyone does when they care for a child.

Constance is told by the Peruvian native man who midwifes her daughter’s birth that for the baby, Cassie, “Her journey will not be easy. But she is strong.” How much better a message is this than what so many rare parents have heard instead: “Go home and love your child.”

This mystic midwife man also offers, “There are powers you don’t know you are capable of.” I know so many rare parents who feel that. Things we never could have imagined doing, we do routinely.

I think the reasons for the poor reviews of Madame Web and its poor performance at the box office centre on how little time we get with superheroes in their suits. Despite bringing us the feature film debuts of four new spider-women, we get only about five minutes of screen time with them suited up to fight the bad guy.

This spider-squad includes:

• Julie Cornawall/Spider-Woman (played by Sydney Sweeney, of Euphoria), who previously made her big screen debut in the animated Spider-Man: Across the Spider-Verse, among dozens of Spider-powered folks, including Sun-Spider who has Ehler’s Danlos syndrome.
• Mattie Franklin/Spider-Woman (Celeste O’Connor of Ghost Busters: Afterlife). In the comics her dad is Norman Osborne, the Green Goblin.
• Anya Corazon/Spider-Girl aka Araña (Isabela Merced of Dora and the Lost City of Gold)

So audiences weren’t wrong to expect a film chockful of superhero action. And while there is plenty of explosive action it’s not done in colourful superhero attire or even with much in the way of superpowers. Instead, this film is almost entirely an origin story for the four spider-friends.

Personally I like it when a film takes that risk and gives a slow build to the backstory, like Unbreakable (2000, directed by M. Night Shyamalan)—another film related to a rare disease (osteogenesis imperfecta), which I reviewhere). But I suppose for it to work best you have to get a sequel film made. In the case of Madame Web that may be doubtful.

At the end of Madame Web, we see Cassandra Webb in a pose that hews closer to her many comic book appearances. She wears a blindfold and sits in a wheelchair. This suggests the symptoms of MG have worsened for Cassie despite her mother’s efforts at a cure.

By now many people have superhero movie fatigue. They’re tired of Marvel and DC movies. My wife is among them. A few years back she adopted the habit of watching the beginning of each film with my son and me and then excusing herself once the origin story was established. She’d say, “That’s the only part that’s interesting.” But Madame Web held her interest the whole time. No doubt, in part, because it’s a women-centred film, but largely because the whole film is the origin story.

I know the reviews of this film were terrible. Aside from its lack of superheroic powers wielded by people in superhero suits, I think the lack of heart in this story may be the culprit. The villain doesn’t feel honestly motivated and the heroes are left to just react and survive.

But for me, with my bias, I found a lot of heart: the rare mom’s heart as she journeys to the heart of the jungle at the cost of her life to help her daughter survive a rare disease. I admit that’s not something the general audiences will attach as much meaning to. For me, Madame Web is less the story of Cassie and her squad but instead the sacrifice of Constance and her legacy to Cassie.

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The Magic Bracelet

Back in 2013, there was another film that involved a trip to the jungles of Peru to find a cure for a rare disease. This 18-minute short film, The Magic Bracelet, more explicitly focuses on rare disease struggles. It was written by a young girl who had mitochondrial disease, Rina Goldberg, and co-written by Oscar-winner Diablo Cody, Juno). In it a young girl has a vision of a flower in Peru that could cure her friend’s mitochondrial disease. The girl, played by Hailee Steinfeld (voice of Gwen Stacy in Spider-Man: Across the Spider-Verse, and Hawkeye in The Marvels) travels to find not only the powerful plant but a mystic native man to guide them, played by J.K. Simmons (J. Jonah Jameson in Spider-Man).

I was thrilled to screen The Magic Bracelet seven years ago as part of DISORDER: The Rare Disease Film Festival in Boston and again in San Francisco. You can watch the trailer for ithere.

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Editor’s note: To find more rare disease films and documentaries, you can add The DISORDER Channel free to your FireTV devices and stream more than 250 films and videos to your TV. Daniel especially recommends a 16-minute true-life story of two rare moms (and dads) fighting for their sons to get access to one of the few treatment options for the rare disease STXBP1—Together We Travel: A STXBP1 Journey, directed by Bo Bigelow. He says: “It shows real-life rare disease superheroes, and just as in Madame Web, Unbreakable or The Magic Bracelet, they don’t wear capes.”

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