The parents of tiny Matilde, the baby who recently received “the world’s most expensive medication” – which promises to cure her deadly genetic disorder – have a massive €2.5 million headache on their hands.
This is the amount raised over social media when the ‘miracle cure’ for spinal muscular atrophy wasn’t provided by the Portuguese State.
But once the case hit the headlines, the situation changed: the State stepped in and has since funded the groundbreaking single-shot injection which costs just under €2 million per patient.
Matilde received her shot last week, along with another sick baby struggling with the same disease (click here).
But the situation has left some of those who donated to Matilde’s parents’ heartwrenching online appeal feeling uncomfortable.
Reports today suggest at least one has already requested the return of the €100 he donated.
The man has told reporters he has been assured by the baby’s mother that he will get his money back – but he has no idea when.
Legal experts meantime have said the money “must be returned”.
People donated on a basis that was altered, explains former vice-president of the Law Association João Perry da Câmara.
In the meantime, Matilde’s parents have been using the money – passing it on to other sick children, not all of them victims of spinal muscular atrophy.
In other words, the landscape is constantly changing. It’s not clear how many donors will ask for their money back, but they have a year in which to do so.
Meantime, little Matilde remains ‘in good health’, recovering at home and ‘posting’ regular updates for followers over Facebook.