It’s the news the B.C. parents have been waiting for.
After raising almost $2.5 million on GoFundMe and fighting every step of the way for treatment for their baby girl, they have revealed she will finally be getting the help she needs, soon.
Lucy Van Doormaal is only four months old but she has already been diagnosed with spinal muscular atrophy, also known as SMA, which results in the loss of muscle movement.
Without treatment, she would likely not make it to her second birthday. But her parents revealed Saturday morning that Lucy will be receiving Zolgensma, described as one of the priciest drugs in the world. It will give her the gene she is missing and although it won’t correct any loss of muscle movement so far it will stop the spread of SMA.
In a statement, Lucy’s parents said they don’t have a confirmed date for the treatment yet but it will likely be early September.
Right now they are focusing on preparing Lucy for her treatment.
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“We are so so so grateful for every ounce of energy everyone has poured into Lucy’s fundraiser and we hope you celebrate with us,” the update reads.
Zolgensma has not yet been approved in Canada, only the United States, but Lucy does not have time to wait for Canadian approval.
Lucy already has to be fed through a feeding tube and requires a breathing-support machine while she sleeps.
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