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.
There's a reason why some people can perfectly copy accents, and others can't
Turns out, there's a neurodivergent link.
A woman in black long sleeve shirt stands in front of mirror.
Have you ever had that friend who goes on vacation for four days to London and comes back with a full-on Queen's English posh accent? "Oooh I left my brolly in the loo," they say, and you respond, "But you're from Colorado!" Well, there are reasons they (and many of us) do that, and usually it's on a pretty subconscious level.
It's called "accent mirroring," and it's actually quite common with people who are neurodivergent, particularly those with ADHD (Attention Deficit Hyperactivity Disorder). According Neurolaunch, the self-described "Free Mental Health Library," "Accent mirroring, also known as accent adaptation or phonetic convergence, is the tendency to unconsciously adopt the accent or speech patterns of those around us. This linguistic chameleon effect is not unique to individuals with ADHD, but it appears to be more pronounced and frequent in this population."
Essentially, when people have conversations, we're constantly "scanning" for information—not just the words we're absorbing, but the inflection and tone. "When we hear an accent, our brains automatically analyze and categorize the phonetic features, prosody, and intonation patterns," writes Neurolaunch. For most, this does result in copying the accent of the person with whom we're speaking. But those with ADHD might be more sensitive to auditory cues. This, "coupled with a reduced ability to filter out or inhibit the impulse to mimic…could potentially explain the increased tendency for accent mirroring."
While the article explains further research is needed, they distinctly state that, "Accent mirroring in individuals with ADHD often manifests as an unconscious mimicry of accents in social situations. This can range from subtle shifts in pronunciation to more noticeable changes in intonation and speech rhythm. For example, a person with ADHD might find themselves unconsciously adopting a Southern drawl when conversing with someone from Texas, even if they’ve never lived in the South themselves."
People are having their say online. On the subreddit r/ADHDWomen, a thread began: "Taking on accents is an ADHD thing?" The OP shares, "My whole life, I've picked up accents. I, myself, never noticed, but everyone around me would be like, 'Why are you talking like that??' It could be after I watched a show or movie with an accent or after I've traveled somewhere with a different accent than my 'normal.'
They continue, "Apparently, I pick it up fast, but it fades out slowly. Today... I'm scrolling Instagram, I watch a reel from a comedian couple (Darcy and Jeremy. IYKYK) about how Darcy (ADHD) picks up accents everywhere they go. It's called ADHD Mirroring??? And it's another way of masking."
(The OP is referring to Darcy Michaels and his husband Jeremy Baer, who are both touring comedians based in Canada.)
Hundreds of people on the Reddit thread alone seem to relate. One comments, "Omfg I've done this my whole life; I'll even pick up on the pauses/spaces when I'm talking to someone who is ESL—but English is my first language lol."
Sometimes, it can be a real issue for those around the chameleon. "I accidentally mimicked a waitress's weird laugh one time. As soon as she was out of earshot, my family started to reprimand me, but I was already like 'oh my god I don’t know why I did that, I feel so bad.'"
Many commenters on TikTok were shocked to find out this can be a sign of ADHD. One jokes, "Omg, yes, at a store the cashier was talking to me and she was French. She's like 'Oh are you French too? No, I'm not lol. I'm very east coast Canada."
And some people just embrace it and make it work for them. "I mirror their words or phrase! I’m 30. I realized I start calling everyone sweetie cause my manager does & I work at coffee shop."