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Desperate to save their children, parents become unexpected drug developers

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Ignored by the pharma industry, a growing number of parents are taking drug development for their children’s ultra-rare diseases into their own hands. One couple in Switzerland shares what it takes to keep hope alive. February 2, 2025, was the most frightening day of Mariann Vegh’s life. She had just returned from a walk in her neighbourhood in Trélex, western Switzerland, with her five-month-old son Erik peacefully asleep in his pram. When he woke up, he started convulsing, struggling to breathe. By the time an ambulance arrived, the seizure was over, but Mariann will never forget the feeling of helplessness. “It was only eight minutes before emergency services arrived, but it felt like an eternity,” Mariann, a marketing director at a consumer health company, told Swissinfo. “I can still hear my voice, desperately calling out for Erik.” Erik experienced several more seizures over the following two weeks as he lay in hospital while doctors conducted a series of tests to identify ... Full story here Are you the author?
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SWI swissinfo.ch – the international service of the Swiss Broadcasting Corporation (SBC). Since 1999, swissinfo.ch has fulfilled the federal government’s mandate to distribute information about Switzerland internationally, supplementing the online offerings of the radio and television stations of the SBC. Today, the international service is directed above all at an international audience interested in Switzerland, as well as at Swiss citizens living abroad.
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