upworthy
Heroes

Dying 'butterfly child' saved thanks to a radical skin replacement.

Doctors saved the life of a dying boy by replacing 80% of his skin with a last-chance experimental gene therapy.

Not only did he survive, but thanks to the therapy, the boy may even be free of the effects of the devastating genetic condition that nearly killed him.

In June 2015, a 7-year-old boy named Hassan arrived in the burn unit of a German children's hospital.

Hassan was gravely ill, close to dying. More than half of the skin on his body was gone. But though he was in the burn unit, these wounds weren't burns.

Hassan was born in Syria with a devastating and often deadly genetic condition called junctional epidermolysis bullosa, or JEB.

Epidermolysis bullosa is the result of a mutation in a person's genes and makes a person's skin fragile. Kids with the condition are sometimes called "butterfly children" because their skin is said to be as fragile as a butterfly's wings. Even the slightest touch can lead to wounds or blisters — and that's on a good day.

An out-of-control skin infection linked to his condition had landed Hassan in the hospital in the worst shape of his life. Only the skin on Hassan's head and a small portion of one leg remained intact and untouched.

"He was in severe pain and asking a lot of questions," Hassan's father said, as reported by the AP. "'Why do I suffer from this disease? Why do I have to live this life? All children can run around and play, why am I not allowed to play soccer?' I couldn’t answer these questions."

The German doctors tried to give Hassan a skin graft from his father, but it didn't take. The pain ended up being so bad that Hassan needed to be placed in a medically-induced coma. Desperate, and out of conventional options, the Germans called up Dr. Michele de Luca, a specialist from the University of Moderna who specialized in regenerative medicine.

"We were forced to do something dramatic because this kid was dying," de Luca said.

It was time to experiment. De Luca figured, if a faulty gene in the boy's skin was a problem, to heck with it. Why not just grow him new skin from scratch?

A sheet that could contain the tweaked skin cells. Photo from CMR Unimore/Nature.

Our skin naturally replaces itself about once a month thanks to regenerative stem cells deep inside it. If de Luca could fix the faulty gene in just these cells in particular, eventually all of Hassan's skin would contain the new, fixed gene.

De Luca removed a patch of the boy's undamaged skin and, through genetic editing, was able to find some of these cells, insert a working copy of the suspect gene, and then grow the cells into large sheets, which were then grafted onto Hassan's body.

This technique had been attempted before but was still experimental and only on a very small area of skin. By the time de Luca and his team were done, their new, healthy skin would end up covering about 80% of the boy's body.

Going this far was unprecedented. As to whether it would work, once the grafts were in place, all the doctors and Hassan's parents could do was wait.

The risk paid off. "This kid is back to his normal life again," said Dr. Tobias Rothoeft, one of the German doctors.

Photo from Ruhr University Bochum.

In the two years since the operation, Hassan has gone back to school and is even playing sports. He doesn't need medication, and if he does get a cut, his skin heals up just fine.

"That’s what we dreamed of doing and it was possible," Rothoeft said.

The boy will still need to be monitored for any potential complications. But for now, things seem good. And an amazing amount of progress on a condition that many thought incurable.

Genetic conditions can be cruel. There are a lot of people, kids and adults alike, who have to live with painful or debilitating conditions, like cystic fibrosis or sickle cell anemia. And we are a long way from being able to help with many of them — the researchers note that this even this therapy might not necessarily work for everyone with this boy's condition.

But this does represent a big, striking win for the field of regenerative medicine. The science is still young and there are many hurdles yet to overcome. But when it works, well, there is at least one set of parents who can attest to how powerful it can be.

The boy's case, and his treatment, were published on Nov. 9 in the journal Nature.

Mental Health

Motivation expert explains how two simple words can free you from taking things personally

You don't need to take responsibility for everything and everyone.

via TEDx SF/Flickr and TEDx SF/Flickr

Mel Robbins making a TED Talk.

Towards the end of The Beatles’ illustrious but brief career, Paul McCartney wrote “Let it Be,” a song about finding peace by letting events take their natural course. It was a sentiment that seemed to mirror the feeling of resignation the band had with its imminent demise.

The bittersweet song has had an appeal that has lasted generations, and that may be because it reflects an essential psychological concept: the locus of control. “It’s about understanding where our influence ends and accepting that some things are beyond our control,” Jennifer Chappell Marsh, a marriage and family therapist, told The Huffington Post. “We can’t control others, so instead, we should focus on our own actions and responses.”

This idea of giving up control (or the illusion of it) when it does us no good was perfectly distilled into two words that everyone can understand: "Let Them." This is officially known as the “Let Them” theory. Podcast host, author, motivational speaker and former lawyer Mel Robbins explained this theory perfectly in a vial Instagram video posted in May 2023.

“I just heard about this thing called the ‘Let Them Theory,’ I freaking love this,” Robbins starts the video.

“If your friends are not inviting you out to brunch this weekend, let them. If the person that you're really attracted to is not interested in a commitment, let them. If your kids do not want to get up and go to that thing with you this week, let them.” Robbins says in the clip. “So much time and energy is wasted on forcing other people to match our expectations.”

“If they’re not showing up how you want them to show up, do not try to force them to change; let them be themselves because they are revealing who they are to you. Just let them – and then you get to choose what you do next,” she continued.

The phrase is a great one to keep in your mental health tool kit because it’s a reminder that, for the most part, we can’t control other people. And if we can, is it worth wasting the emotional energy? Especially when we can allow people to behave as they wish and then we can react to them however we choose?

@melrobbins

Stop wasting energy on trying to get other people to meet YOUR expectations. Instead, try using the “Let Them Theory.” 💥 Listen now on the #melrobbinspodcast!! “The “Let Them Theory”: A Life Changing Mindset Hack That 15 Million People Can’t Stop Talking About” 🔗 in bio #melrobbins #letthemtheory #letgo #lettinggo #podcast #podcastepisode

How you respond to their behavior can significantly impact how they treat you in the future.

It’s also incredibly freeing to relieve yourself of the responsibility of changing people or feeling responsible for their actions. As the old Polish proverb goes, “Not my circus, not my monkeys.”

“Yes! It’s much like a concept propelled by the book ‘The Subtle Art of Not Giving a F**k.’ Save your energy and set your boundaries accordingly. It’s realizing that we only have “control” over ourselves and it’s so freeing,” one viewer wrote.

“Let It Be” brought Paul McCartney solace as he dealt with losing his band in a very public breakup. The same state of mind can help all of us, whether it’s dealing with parents living in the past, friends who change and you don’t feel like you know them anymore, or someone who cuts you off in traffic because they’re in a huge rush to go who knows where.

The moment someone gets on your nerves and you feel a jolt of anxiety run up your back, take a big breath and say, “Let them.”

let them theory, let it be, paul mccartney, the beatles, exhalethe beatles wave GIFGiphy

This article originally appeared last year.

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Parenting

Mom shares brilliant bedtime 'worry wash' ritual that stopped her daughter's meltdowns

"Bedtimes have gone from 45-minute tearful ordeals to 15-minute snuggles and stories."

Photo by Ben Griffiths on Unsplash

Mom reads daughter a bedtime story.

Bedtime can be one of the most dreaded parts of parenting. Long and drawn out with excuse after excuse to do anything but sleep, putting kids to bed is no easy feat.

But one mom shared her brilliant bedtime hack for getting her five-year-old daughter to bed in no time called a "worry wash." In a Reddit parenting community, MonaMagic2006 explained how it transformed their nighttime routine.

"My youngest (5) would have massive pre-sleep meltdowns about monsters, school worries, or whatever her busy little mind latched onto," she wrote. "Three weeks ago, my husband and I started the 'worry wash' - she draws her worries on water-soluble paper, then takes them to the bathroom sink, says goodbye, and watches them dissolve under running tap water."

worry wash, coloring, child anxiety, bedtime trick, bedtime routineMeme Reaction GIFGiphy

According to her, it has completely changed bedtime with unexpected benefits. "The transformation has been brilliant. Bedtimes have gone from 45-minute tearful ordeals to 15-minute snuggles and stories. She's sleeping through more consistently too!" she added.

Many parents loved the idea:

"This is legendary parenting stuff. Kudos!" one parent commented.

Another added, "This is awesome!!"

Another shared, "I absolutely love the idea of the "worry wash"! It’s such a creative and tangible way to help your child let go of their anxieties before bed. It’s amazing how something so simple can transform bedtime so quickly."

sleep, bedtime, kid bedtime, go to sleep, bedtime routineTired Good Night GIF by Pudgy PenguinsGiphy

After explaining the ritual, she offered a prompt to other parents: "Has anyone tried something similar? What bedtime rituals have worked wonders in your homes?" And they delivered their best bedtime ritual hacks:

"One tip someone gave me that I love is that if you have to stop them doing something, say bye bye to it. Bye bye playground. Bye bye bluey. They copy you and are much happier letting go." BikeProblemGuy

"We started the '5 good things to think about at bedtime.' We started it when our little worrier was little and still do it from time to time when he is older. Basically, if we went on the worry train at bedtime, we would think about 5 things we were looking forward to. Simple, but really worked for our guy." FuzzyWuzzy44

"We mixed up Monster Spray aka water and eucalyptus oil to spray the outside doors so the monsters wouldn't come in." lulabell1295

monster, scary, bed monster, monsters inc, scaredMonsters Inc Disney GIF by filmeditorGiphy

"We got fairy lights to string up on the wall, and a really beautiful picture of fairies and trolls and magical critters in a garden. I told my little one that when everyone is fast asleep, the magic critters all come out of the garden and follow the fairy lights to sprinkle sweet, magical dreams. Every night we read a story about magic because it makes fairies happy, and then they come and sprinkle sweet dreams that, magically, are almost identical to the book we read together!" DgShwgirl

"We use a worry box. It's an invisible box under their beds. I unlock it and open it, and they grab all their worries, etc. out of their heads and put them in the box. Then I close the box, lock it, and let them know if they need their worries, they can get them out in the morning." abcedarian

"We have a little song that I sing whenever either of my kids are worried about nightmares, and while I sing it I pretend to throw their bad dreams away and drop in good dreams. Works like a charm." Final-Quail5857

sleep, sleepy, good night, kids sleep, bedtimeSleepy Good Night GIF by Super SimpleGiphy

"We started a doing an 8 minute children’s guided meditation on YouTube as family before bedtime. It has been so helpful for our anxious autistic 8 year old boy. Here is the link if anyone wants it: 8 minutes kids meditation." swiss_baby_questions

"My little one has a similar ritual where we talk about our “happy thoughts” before bed—she names three things that made her smile that day. It’s become her way of reflecting on the good and calming her mind. It sounds like your ritual is working wonders for your daughter, and I’m sure it’s bringing peace to both of you at bedtime. Thanks for sharing this idea—I might try it out! 😊" Ok-University309

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Pop Culture

Two brothers Irish step dancing to Beyoncé's country hit 'Texas Hold 'Em' is pure delight

The Gardiner Brothers and Queen Bey proving that music can unite us all.

Gardiner Brothers/TikTok (with permission)

The Gardiner Brothers stepping in time to Beyoncé's "Texas Hold 'Em."

In early February 2024, Beyoncé rocked the music world by releasing a surprise new album of country tunes. The album, Renaissance: Act II, includes a song called "Texas Hold 'Em," which shot up the country charts—with a few bumps along the way—and landed Queen Bey at the No.1 spot.

As the first Black female artist to have a song hit No. 1 on Billboard's country music charts, Beyoncé once again proved her popularity, versatility, and ability to break barriers without missing a beat. In one fell swoop, she got people who had zero interest in country music to give it a second look, forced country music fans to broaden their own ideas about what country music looks like, prompted conversations about bending and blending musical genres and styles, and gave the Internet a crash course on the Black roots of country music.

And she inspired the Gardiner Brothers to add yet another element to the mix—Irish step dance.

In a TikTok that's been viewed over 42 million times, the Gardiner Brothers don cowboy hats while they step in time to "Texas Hold 'Em," much to the delight of viewers everywhere.

Watch:

@gardinerbrothers

Beyoncé 🤝 Irish dancing #beyonce #countrymusic

Michael and Matthew Gardiner are professional Irish-American step dancers and choreographers who have gained international fame with their award-winning performances. They've also built a following of millions on social media with videos like this one, where they dance to popular songs, usually in an outdoor environment.

The melding of Irish dance with country music sung by a Black American female artist may seem unlikely, but it could be viewed merely as country music coming back to its roots. As mentioned, country music has roots in Black culture and tradition. One major staple of the country music genre, the banjo, was created by enslaved Africans and their descendants during the colonial era, according to The Smithsonian. The genre also has deep roots in the ballad tradition of the Irish, English and Scottish settlers in the Appalachian region of the U.S. Despite modern country music's struggle to break free from "music for white people" stereotypes, it's much more diverse than many realize or care to admit, and Queen Bey is simply following tradition.

banjo, country music, country, roots, genreMan playing banjo.Canva Photos

People are loving the blending of genres and culture that the TikTok exemplifies.

"Never thought I’d see Irish step dancing while Beyoncé sings country," wrote on commenter. "My life is complete. ♥️"

"So happy Beyoncé dropped this song and exposed my timeline to diversified talent 👏🏽👏🏽," wrote another.

"Beyoncé brought the world together with this song 😭," offered another person.

"Ayeeee Irish Dancing has entered the BeyHive chatroom… WELCOME!! 🔥🔥🔥" exclaimed another.

"I don’t think I can explain how many of my interests are intersecting here," wrote one commenter, reflecting what several others shared as well.

The Beyoncé/Gardiner Brothers combo and the reactions to it are a good reminder that none of us fit into one box of interest or identity. We're all an eclectic mix of tastes and styles, so we can almost always find a way to connect with others over something we enjoy. What better way to be reminded of that fact than through an unexpected mashup that blends the magic of music with the delight of dance? Truly, the arts are a powerful uniting force we should utilize more often.

And for an extra bit of fun, the Gardiner Brothers also shared their bloopers from filming the video. Turns out stepping in the rain isn't as easy as they make it look.

@gardinerbrothers

Beyoncé Bloopers #texasholdem #gardinerbrothers

This article originally appeared last year.

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Motherhood

Mom of teens shares two rarely acknowledged realities of being the 'default parent'

There are actually some real perks to it.

Photo credit: Canva

When you take are of all the things, you're there for all the things.

If there's one key phrase that has permeated the parenting discourse in recent years, it's "default parent," the idea that one parent—almost always the mom—takes on the vast majority of the mental and logistical load of raising children. Even in households where a couple tries to split the work evenly, one parent inevitably keeps track of all the things—kids' doctor and dental appointments, who's outgrowing their clothes or shoes, finding a present for the kid's friend's birthday party that's coming up, adding school events to the calendar, making sure uniforms are washed, etc. The default parent is the first one the school (or the coach, or the orthodontist) calls.

Most of the discussions around default parents revolve around how exhausting it is (because it is), how their invisible work goes unseen and unappreciated, and how partners can help offload some of the burden. But Karen Johnson, mom of three teens and author of What Do I Want to Be When They Grow Up (and Other Thoughts from a 40-something Mom), has been reflecting on her years as the default parent and shared two realities of that role that don't get talked about as much.


How many moms would actually give up the default parent role if they could?

Johnson shares a story about going on a 14-mile hike with her husband, just the two of them, and how she got text messages with questions from their kids 12 times throughout their hike. Meanwhile, her husband's phone never dinged once the whole day. This happened despite her having organized the kids' lives with food prep, a list of chores for them to do, and transportation from Grandma to get the kids where they needed to go so that she and her husband could get away for the day.

hiking, couple, parents, default parent, parentsWhen you're the default parent, you never truly "get away." Photo credit: Canva

On the one hand, Johnson was annoyed that she fielded all of these texts while her husband didn't. "But here's the truth—a truth that often makes my husband's head spin off in frustration," Johnson writes. "As a default parent mom, I don't want the texts to go to anyone else. If the kids had bugged him all day, I'd be looking over his shoulder, asking 'What does she want? What is he eating for lunch? Who is walking the dog? Who is going to what friend's house? How are they getting there? How else is going over there because that one friend is being mean lately and I'm not sure she'd want to go if the other girl is going…What time will they be home? Did they clean their room first?'

"I don't know how to shut it off or truly escape, but tbh, I'm not sure I want to," she admits. "I talk a lot about the exhaustion and overwhelm of default parenting, and I'll continue to do so because we need to normalize all parents sharing the mental load and give grace to moms trying to juggle it all. However. I'm also a big old hypocrite because if anyone tried to pry it all away from me—my job as keeper of the family calendar and the household manager role and all the knowledge about the kids' lives and who got teased at recess last week—well, I'd hold onto all of it with a death grip. This much I know."

This is a reality for many moms—feeling frustrated with the default parent workload but also not really wanting to pass it off to anyone else, either. Johnson explains that in some ways, that means our partners can't win. Logistically speaking, there's a lot that we can't just hand off for them to do and they can't just decide to pick up on their own because so many things are intertwined. It's often easier and even more desirable to just do All The Things yourself, and there's a sense of identity and accomplishment that comes along with fulfilling that role as well that we may not consciously acknowledge.

The non-default parent genuinely misses out on things

Another epiphany Johnson had in discussions with her husband is that the default parent role comes with some real perks that the non-default parent doesn't get.

"We recently had a heavy, but important conversation about this," Johnson writes. "I was carrying all of the kids' proverbial 'stuff' and he was at a big meeting in another country, feeling important in his thriving career. As I lamented that I was jealous of his fancy dinners while we ate leftovers at home, his response was important for me to hear.

'"But you're there. You know everything. You don't miss any of it. I hear about big stuff that they are going through sometimes days later. I know you envy what I have and what I get to do, but I envy what you have, too.'"

Johnson says she hadn't really seen it from his perspective before. It's so easy to look at what we feel is lacking or what we wish we had while overlooking the benefits of what we do have.

"It was helpful to hear my husband's words and feel grateful that, yes, I have been there for everything," she writes. "I know all the things and carry all of their 'stuff.' I am on the inside track, whether that's where I want to be 100 percent of the time or whether I'd occasionally like a mental break to step off for a hot second, but it's true. Default parenting and carrying the mental load is a freaking lot and there's no escape. Ever. But it's also a beautiful blessing and I know that someday I won't need so many keys."

When it feels like so much of the mental load is on your shoulders, default parenting can be overwhelming. But gratitude, Johnson says, has been key to maintaining healthy relationships with her husband and kids, feeling solid in her purpose and value, and keeping her mental health in check, even in the midst of that overwhelm. Gratitude isn't always easy to find, but it's worth looking for, especially when you feel frustrated or resentful.

It can help to hear perspectives from moms who have many years of parenting under their belt, who've had the broad array of experiences and some time to reflect on them, and who can offer some small snippets of wisdom to help those who are in the thick of it. Discover more in Karen Johnson's book here and you can follow her on Facebook and Instagram.

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Culture

Woman who lost her 'pretty privilege' overnight says it changed how she saw everyone

She went from the center of attention to "invisible."

via Canva/Photos

A smiling blonde woman.

There is something extremely unfair about people born with great genetics who are extremely good-looking. Sure, some folks can improve their looks after putting in some work at the gym or learning how to present themselves. but many people we consider conventionally attractive hit the jackpot by simply being born that way.

With little effort, these people have an incredible social advantage in life. They are seen as morally virtuous, receive random favors, are always the center of attention, and are more likely to get raises and promotions at work. The funny thing is that those with pretty privilege don’t realize the incredible advantage they have until it's gone.

What happens when people lose their pretty privilege?

A woman on Reddit recently shared how she realized the power that comes with pretty privilege when she gained a lot of weight, and the world immediately began treating her differently.

pretty privilege, good looking people, social experiment, beauty benefits, weight, inequity, drinks, dateA man hitting on a beautiful woman. via Canva/Photos

“Whether we want to admit it or not, pretty privilege is a thing. And it’s something that I now realize I had for the majority of my life,” the woman wrote in a viral Reddit post. “People were usually very nice to me. I got offered perks like drinks at bars and extra attention when I went out. And I was stared at a lot.”

Things changed for the woman after she had a health condition that required her to take a medication that slowed her metabolism, so she rapidly gained weight. “The fatter I got, the less attention was paid to me. I didn’t notice it at first, but I began to have to ask for customer service at places instead of being offered, and I started to feel invisible, because no one looked at me,” the woman continued. “No one. People would walk right by and not even acknowledge my existence. It was strange at first, then incredibly humbling. I thought, well, this is the new normal.”

The power of thin privilege.

It’s important to note that being a certain weight doesn’t automatically make you good-looking. People can be good-looking at any weight. However, it would be naive to believe that thin people don’t have an advantage in this world.

pretty privilege, good looking people, social experiment, beauty benefits, weight, inequity, A woman weighing herself. via Canva/Photos

The drastic fluctuation in the woman’s weight made her conscious of what other people who don’t have the privilege of being pretty or thin go through in life. It allowed her to have greater compassion for people, regardless of how they look. “My personality started to change a little. I began being thankful for any small interaction someone had with me, and responded to any small act of kindness with gratefulness,” she wrote. “I noticed other not conventionally pretty people, and other overweight people, and made an effort to talk to them and treat them like they mattered. I became a better person. Not that I wasn’t a good person before, but I was now more aware and empathetic to those around me.”

pretty privilege, good looking people, social experiment, beauty benefits, weight, inequity, A woman with curly hair. via Canva/Photos

The woman soon went off the medication and, just like that, she lost weight, and people began to treat her as they had before. “The first time I noticed it was when I was in a store looking for something, and a handsome male worker came up to me and asked if I needed help. He looked me in the eyes. I felt like I mattered again,” she continued. “Then I instantly felt sad and horrified, because of the cosmic unfairness of life, that how we look really does determine how people treat us, even though it shouldn’t.”

After the woman lost her privilege, she better understood what other people go through. On one hand, she probably enjoys the privilege, but on the other, she feels that the world is much less fair than she once imagined. At least, in the end, it’s taught her to be more empathetic to everyone she meets. “And also, when someone looks at me and smiles, no matter who they are, I give them a huge smile back,” she finished her post.

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