20 October 2020 - A little over a year ago, the idea of raising US$2.125 million to receive the “world’s most expensive drug” for baby Eva Batista seemed impossibly daunting for her family. 

But thanks to generous donors, including a fellow fundraiser, Eva’s parents are elated she will have the necessary funds to get the lifesaving gene therapy treatment she needs.

Eva, who turned one in August, has spinal muscular atrophy (SMA), a rare neuromuscular disease that causes muscle weakness and atrophy. Basic mechanisms like breathing, which requires the diaphragm to contract, becomes a matter of survival. Many patients like Eva, who has Type 1 -- which are when symptoms are present either at birth or before they are six months -- do not survive past two.

This month, the family announced on their GoFundMe page and Instagram that they officially met their $2.8 million goal to get Novartis’ Zolgensma, a single-dose gene therapy for babies under the age of two with SMA.

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