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

James Gaines
11.10.17

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.

technology medicine medical advancement skin condition butterfly boy skin grafts
Heroes

Florida city forecloses on man's home after fining him $30,000 for not mowing his lawn.

Youtube

Should a man lose his home because the grass in his yard grew higher than 10 inches? The city of Dunedin, Florida seems to think so.

According to the Institute of Justice, which is representing Jim Ficken, he had a very good reason for not mowing his lawn – and tried to rectify the situation as best he could.

In 2014, Jim's mom became ill and he visited her often in South Carolina to help her out. When he was away, his grass grew too long and he was cited by a code office; he cut the grass and wasn't fined.

France has started forcing supermarkets to donate food instead of throwing it away.

But several years later, this one infraction would come back to haunt him after he left to take care of him's mom's affairs after she died. The arrangements he made to have his grass cut fell through (his friend who he asked to help him out passed away unexpectedly) and that set off a chain reaction that may result in him losing his home.

The 69-year-old retiree now faces a $29,833.50 fine plus interest. Watch the video to find out just what Jim is having to deal with.

Mow Your Lawn or Lose Your House! www.youtube.com

florida dunedin lawn mowing jim ficken
Cities

Michelle Obama named 'most admired woman in the world,' because of course she is.

The world can't get enough Michelle.

Jimmy Kimmel Live/YouTube

The world officially loves Michelle Obama.

The former first lady has overtaken the number one spot in a poll of the world's most admired women. Conducted by online research firm YouGov, the study uses international polling tools to survey people in countries around the world about who they most admire.

In the men's category, Bill Gates took the top spot, followed by Barack Obama and Jackie Chan.

In the women's category, Michelle Obama came first, followed by Oprah Winfrey and Angelina Jolie. Obama pushed Jolie out of the number one spot she claimed last year.

Unsurprising, really, because what's not to love about Michelle Obama? She is smart, kind, funny, accomplished, a great dancer, a devoted wife and mother, and an all-around, genuinely good person.

She has remained dignified and strong in the face of rabid masses of so-called Americans who spent eight years and beyond insisting that she's a man disguised as a woman. She's endured non-stop racist memes and terrifying threats to her family. She has received far more than her fair share of cruelty, and always takes the high road. She's the one who coined, "When they go low, we go high," after all.

She came from humble beginnings and remains down to earth despite becoming a familiar face around the world. She's not much older than me, but I still want to be like Michelle Obama when I grow up.

Her memoir, Becoming, may end up being the best-selling memoir of all time, having already sold 10 million copies—a clear sign that people can't get enough Michelle, because there's no such thing as too much Michelle.

Don't like Michelle Obama? Don't care. Those of us who love her will fly our MO flags high and without apology, paying no mind to folks with cold, dead hearts who don't know a gem of a human being when they see one. There is nothing any hater can say or do to make us admire this undeniably admirable woman any less.

When it seems like the world has lost its mind—which is how it feels most days these days—I'm just going to keep coming back to this study as evidence that hope for humanity is not lost.

Here. Enjoy some real-life Michelle on Jimmy Kimmel. (GAH. WHY IS SHE SO CUTE AND AWESOME. I can't even handle it.)

Michelle & Barack Obama are Boring Now www.youtube.com

michelle obama michelle obama birthday obama barack obama
Most Shared

France has started forcing supermarkets to donate food instead of throwing it away.

via EarthFix / Flickr

What will future generations never believe that we tolerated in 2019?

Dolphin and orca captivity, for sure. They'll probably shake their heads at how people died because they couldn't afford healthcare. And, they'll be completely mystified at the amount of food some people waste while others go starving.

According to Biological Diversity, "An estimated 40 percent of the food produced in the United States is wasted every year, costing households, businesses and farms about $218 billion annually."

There are so many things wrong with this.

First of all it's a waste of money for the households who throw out good food. Second, it's a waste of all of the resources that went into growing the food, including the animals who gave their lives for the meal. Third, there's something very wrong with throwing out food when one in eight Americans struggle with hunger.

Supermarkets are just as guilty of this unnecessary waste as consumers. About 10% of all food waste are supermarket products thrown out before they've reached their expiration date.

Three years ago, France took big steps to combat food waste by making a law that bans grocery stores from throwing away edible food.According to the new ordinance, stores can be fined for up to $4,500 for each infraction.

Previously, the French threw out 7.1 million tons of food. Sixty-seven percent of which was tossed by consumers, 15% by restaurants, and 11% by grocery stores.

This has created a network of over 5,000 charities that accept the food from supermarkets and donate them to charity. The law also struck down agreements between supermarkets and manufacturers that prohibited the stores from donating food to charities.

"There was one food manufacturer that was not authorized to donate the sandwiches it made for a particular supermarket brand. But now, we get 30,000 sandwiches a month from them — sandwiches that used to be thrown away," Jacques Bailet, head of the French network of food banks known as Banques Alimentaires, told NPR.

It's expected that similar laws may spread through Europe, but people are a lot less confident at it happening in the United States. The USDA believes that the biggest barrier to such a program would be cost to the charities and or supermarkets.

"The logistics of getting safe, wholesome, edible food from anywhere to people that can use it is really difficult," the organization said according to Gizmodo. "If you're having to set up a really expensive system to recover marginal amounts of food, that's not good for anybody."

Plus, the idea may seem a little too "socialist" for the average American's appetite.

"The French version is quite socialist, but I would say in a great way because you're providing a way where they [supermarkets] have to do the beneficial things not only for the environment, but from an ethical standpoint of getting healthy food to those who need it and minimizing some of the harmful greenhouse gas emissions that come when food ends up in a landfill," Jonathan Bloom, the author of American Wasteland, told NPR.

However, just because something may be socialist doesn't mean it's wrong. The greater wrong is the insane waste of money, damage to the environment, and devastation caused by hunger that can easily be avoided.

Planet

Single dad asks his daughters for fashion advice before a date and strangers on social media responded with some helpful suggestions.

The world is dark and full of terrors, but every once in a while it graces us with something to warm our icy-cold hearts. And that is what we have today, with a single dad who went viral on Twitter after his daughter posted the photos he sent her when trying to pick out and outfit for his date. You love to see it.




After seeing these heartwarming pics, people on Twitter started suggesting this adorable man date their moms. It was essentially a mom and date matchmaking frenzy.

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