Baby dies waiting for ‘miracle’ shot of world’s most expensive medicine

A 13-month-old baby girl died waiting for a miracle shot of the world’s most expensive medicine.

Noa Feteira would have been the third child to receive Zolgensma, the latest wonder drug for treating SMA (spinal muscular atrophy), costing almost €2 million for the one-off single-shot.

Earlier this year, much younger baby Matilde Sande moved the nation as her parents battled to raise the money to get her treated by Zolgensma – still not fully authorised by medicines authority INFARMED (click here).

Matilde and another baby Natália Silva were treated in August (click here). Both now are showing clear signs of improvement.

But Noa never got the chance.

She was so close to receiving the drug, too. A meeting to discuss the way ahead was scheduled with doctors on Tuesday, but “at the very hour” that her parents should have been listening to the plans, they were leaving the hospital morgue.

Writing over Facebook, her parents wrote how cruelly ironic life can be.

Tabloid Correio da Manhã claims the couple raised their anxiety in September over the delay in getting Zolgensma approved for their daughter.

“Her case was on the (INFARMED) platform since September 5… much longer than the 48 hours it took to respond to the other two cases (of Matilde and Natália)”, they told the paper.

Noa had recently been hospitalised. She was being treated with the only authorised drug in Portugal for SMA in small children: Spinraza.

Says CM, Noa was released from hospital on October 3, as her parents “waited for the miracle drug” that they hoped would turn their child’s life around.

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