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.

Courtesy of Elaine Ahn

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Teens of today live in a totally different world than the one their parents grew up in. Not only do young people have access to technologies that previous generations barely dreamed of, but they're also constantly bombarded with information from the news and media.

Today’s youth are also living through a pandemic that has created an extra layer of difficulty to an already challenging age—and it has taken a toll on their mental health.

According to Mental Health America, nearly 14% of youths ages 12 to 17 experienced a major depressive episode in the past year. In a September 2020 survey of high schoolers by Active Minds, nearly 75% of respondents reported an increase in stress, anxiety, sadness and isolation during the first six months of the pandemic. And in a Pearson and Connections Academy survey of US parents, 66% said their child felt anxious or depressed during the pandemic.

However, the pandemic has only exacerbated youth mental health issues that were already happening before COVID-19.

“Many people associate our current mental health crisis with the pandemic,” says Morgan Champion, the head of counseling services for Connections Academy Schools. “In fact, the youth mental health crisis was alarming and on the rise before the pandemic. Today, the alarm continues.”

Mental Health America reports that most people who take the organization’s online mental health screening test are under 18. According to the American Psychiatric Association, about 50% of cases of mental illness begin by age 14, and the tendency to develop depression and bipolar disorder nearly doubles from age 13 to age 18.

Such statistics demand attention and action, which is why experts say destigmatizing mental health and talking about it is so important.

“Today we see more people talking about mental health openly—in a way that is more akin to physical health,” says Champion. She adds that mental health support for young people is being more widely promoted, and kids and teens have greater access to resources, from their school counselors to support organizations.

Parents are encouraging this support too. More than two-thirds of American parents believe children should be introduced to wellness and mental health awareness in primary or middle school, according to a new Global Learner Survey from Pearson. Since early intervention is key to helping young people manage their mental health, these changes are positive developments.

In addition, more and more people in the public eye are sharing their personal mental health experiences as well, which can help inspire young people to open up and seek out the help they need.

“Many celebrities and influencers have come forward with their mental health stories, which can normalize the conversation, and is helpful for younger generations to understand that they are not alone,” says Champion.

That’s one reason Connections Academy is hosting a series of virtual Emotional Fitness talks with Olympic athletes who are alums of the virtual school during Mental Health Awareness Month. These talks are free, open to the public and include relatable topics such as success and failure, leadership, empowerment and authenticity. For instance, on May 18, Olympic women’s ice hockey player Lyndsey Fry will speak on finding your own style of confidence, and on May 25, Olympic figure skater Karen Chen will share advice for keeping calm under pressure.

Family support plays a huge role as well. While the pandemic has been challenging in and of itself, it has actually helped families identify mental health struggles as they’ve spent more time together.

“Parents gained greater insight into their child’s behavior and moods, how they interact with peers and teachers,” says Champion. “For many parents this was eye-opening and revealed the need to focus on mental health.”

It’s not always easy to tell if a teen is dealing with normal emotional ups and downs or if they need extra help, but there are some warning signs caregivers can watch for.

“Being attuned to your child’s mood, affect, school performance, and relationships with friends or significant others can help you gauge whether you are dealing with teenage normalcy or something bigger,” Champion says. Depending on a child’s age, parents should be looking for the following signs, which may be co-occurring:

  • Perpetual depressed mood
  • Rocky friend relationships
  • Spending a lot of time alone and refusing to participate in daily activities
  • Too much or not enough sleep
  • Not eating a regular diet
  • Intense fear or anxiety
  • Drug or alcohol use
  • Suicidal ideation (talking about being a burden or giving away possessions) or plans

“You know your child best. If you are unsure if your child is having a rough time or if there is something more serious going on, it is best to reach out to a counselor or doctor to be sure,” says Champion. “Always err on the side of caution.”

If it appears a student does need help, what next? Talking to a school counselor can be a good first step, since they are easily accessible and free to visit.

“Just getting students to talk about their struggles with a trusted adult is huge,” says Champion. “When I meet with students and/or their families, I work with them to help identify the issues they are facing. I listen and recommend next steps, such as referring families to mental health resources in their local areas.”

Just as parents would take their child to a doctor for a sprained ankle, they shouldn’t be afraid to ask for help if a child is struggling mentally or emotionally. Parents also need to realize that they may not be able to help them on their own, no matter how much love and support they have to offer.

“That is a hard concept to accept when parents can feel solely responsible for their child’s welfare and well-being,” says Champion. “The adage still stands—it takes a village to raise a child. Be sure you are surrounding yourself and your child with a great support system to help tackle life’s many challenges.”

That village can include everyone from close family to local community members to public figures. Helping young people learn to manage their mental health is a gift we can all contribute to, one that will serve them for a lifetime.

Join athletes, Connections Academy and Upworthy for candid discussions on mental health during Mental Health Awareness Month. Learn more and find resources here.

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