The parents of a baby who needs an expensive drug to treat a potentially deadly genetic disorder are entering a lottery in the hopes of winning a life-saving dose for their child.
Eva Batista is currently five months old, and she has spinal muscular atrophy (SMA), a rare and potentially deadly genetic disorder that weakens her muscles, making it difficult to breathe or eat without the aid of tubes. The disorder is believed to affect about one in 11,000 babies. The only possible cure? A gene therapy called Zolgensma, which costs $2.8-million for a one-time dose. For the drug to have a chance of helping Eva, she needs to receive it before she turns two.
Eva’s parents, Jessica and Ricardo Batista, basically have two options to come up with a way to obtain the treatment. The first is through a long-shot fundraising campaign to raise the money themselves. Raising this amount of money in such a short period of time is challenging, which is why Jessica and Ricardo are turning to option two, via an international dose lottery.
The lottery is run by the Swiss manufacturer of Zolgensma, and they’re planning to give away at many as 100 doses of the one-time treatment this year in countries where the drug is not yet approved, including Canada.
Watch in the video clip above as Ricardo tell us more about her condition, how the lottery works and what treatment options are available to Eva if she can’t get the dose of Zolgensma.
To contribute to Eva’s fundraising campaign, visit the family’s GoFundMe page.