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Ritratto della sofferenza in peer-review [EN]

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Un lungo articolo a firma di Daniel Engber pubblicato sull’Atlantic racconta come James Sulzer – esperto in robotica riabilitativa e professore presso l’Università del Texas ad Austin – e sua moglie Lindsay – bioingegnera specializzata in medicina rigenerativa – stiano affrontando il dramma della loro figlia Livie, alla quale, nella primavera del 2020, la caduta di un albero nel giardino della loro abitazione ha causato una grave lesione cerebrale. Il pezzo smonta alcuni luoghi comuni intorno alla robotica e alle terapie riabilitative, mostrandoci come le convinzioni dei coniugi Sulzer – autori di un notevole articolo pubblicato sulla rivista scientifica Journal of NeuroEngineering and Rehabilitation in cui illustrano ogni aspetto della loro drammatica esperienza – nonché l’approccio di questi alle cure di Livie, siano progressivamente mutati dal giorno in cui la loro vita e in particolare quella della loro figlia sono cambiate per sempre.

The last words that Liviana Sulzer spoke, 18 months ago, were very much in character: “Now it’s time for a song.” This was often how she felt, living as she did inside a toddler movie-musical, where even just a spilled cup of milk could get her up onto a chair, twirling with her arms out wide and singing as loud as she could manage: We just spilled our milk … It was messy on the table, and then we cleaned it up … And noooow it’s aaaaall cleeeaaaned up! When the song was over, she’d bend toward her brothers, ages 6 and 1, in a deep and gracious bow.

It was May 2020—a week before Livie’s fourth birthday—and the kids were playing in the yard. Throughout the Sulzers’ quiet neighborhood in Austin, Texas, the Persian silk trees had begun to bloom in pink-tipped puffs. There were flowers in their backyard, too. Livie had a favorite one, purple and about as tall as she was. She called it Dr. Iris and, trapped at home by the COVID-19 shutdown, she’d made a game of scooting over to it in her push-car and spilling all her problems. (She often couldn’t think of any when she got there.)


James and Lindsay aren’t wealthy, but resources haven’t been an issue. Given their backgrounds and milieu, they can choose among a wide variety of interventions: stem-cell treatments, “diving” sessions in an oxygen tank, infrared-laser therapy, robotic exoskeletons. But as scientists, they’ve been discouraged by the paucity of data on whether any of these approaches really work. Clinical studies in the field are pretty scarce, even when it comes to the most common neural injuries, in adults who suffer strokes. Far less research has been done on injured children; for those like Livie, with damage spread across the brain, delivered by a violent blow, there’s almost nothing.

“How do you make an informed, educated decision?” Lindsay said to me. “It’s a huge challenge, and I think we have a harder time because we want to have some sort of scientific rationale.” James agreed. “It’s very easy, as a scientist, to just be skeptical of everything,” he said. “But as a parent, you need to have some optimism, and you need to take leaps of faith.”

Immagine da Pixabay


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