Updated: Nov 13, 2020
Siyona Shrestha born on the 12th of September, 2019 had eyes that were very expressive even as an infant with compassion and purity in abundance as explained by her mother Aleena Gurung Shrestha. Siyona who is currently a year and three months old at the time of the writing of this blog was diagnosed with spinal muscular atrophy (SMA Type-1) which shattered her parent's hearts. SMA is a very rare neuromuscular disease which was confirmed through her blood samples that were tested when her parents noticed that she couldn't hold her head upright like other babies her age. This news came as a heartwrenching feeling to her guardians.
The neurologists informed Mr. Sandeep Shrestha, Siyona's father that prognosis and gene therapy was the only cure. A gene therapy drug called "Zolgensma" was the only solution to saving Siyona but the expensive cost of 2.1 million USD made it unaffordable for her family. Deprived of all possible hope, establishing a fundraiser became the only possible solution. This fundraiser would proceed to shake the entire nation to its core. It started as the last glimmer of hope for Siyona and her parents but it quickly gained traction on social media resulting in the fundraiser being able to raise $358,794 out of the $2,300,000 goal that is required to purchase this miraculous drug. Various celebrities and organizations have come together to make this miracle a possibility. Hearing about this movement, one can't help but admire how so many people have come together for this cause.
Yet, there seems to be quite the confusion about the massive cost of this medication, and rightfully so in my opinion but after dwelling a little deeper into the history of "Zolgensma" it becomes clear why such a drug is valued so high. As it turns out Zolgensma is more of an immediate cure rather than a form of treatment. If used it won't take months or even days for Siyona to feel better but rather it would start helping her in a matter of hours. It's a miracle when you think about it, but the years of extensive research that was put into the creation of this drug for such a rare disease is why it is so expensive. It's a shame when you think about how our government has not set aside any form of amount for the treatment of such rare diseases.
When Mr. Sandeep himself went with the hopes of some help he was informed that rare diseases aren't the priority of the government. Following on this Mr. Sandeep who is a doctor himself has concluded that there isn't enough awareness regarding such diseases and now hopes to establish an SMA Foundation in Nepal. According to the couple, the money they have been raising for their baby girl will go to other helpless children if they lose Siyona. They want to establish an SMA foundation in Nepal, and even if Siyona is cured, the extra money will go to the same cause.
"We have kept all the transactions transparent. It's quite systematic, and contributors have access to that. We hope for the best, but if we lose Siyona, the fund will be used for other children like her," Sandeep stated. The whole movement has taken me by surprise, it's taken a very grim situation and morphed it into warm rays of hope where people have taken it upon themselves to make the miracle possible. The best part about it is that it isn't just about Siyona anymore, her parents having witnessed the hopelessness have committed themselves to establish a foundation for other children in similar states to be able to get that form of help too. If you haven't already please consider supporting this fundraiser program even with the bare minimum value. Every little bit matters more than we think. It's hope itself which allows us to hang on and keeping marching on so it's very commendable to think of such a beautiful movement unfolding in front of our eyes even if it remains just the hopes for a miracle. The links to the fundraiser program as well as the esewa donation page will be linked below as well as the website of SMA foundation I will leave the website of SMA foundation which needs funds for its research down below for those who are interested which is working for the cause of making a cure more accessible for SMA for anyone interested, https://smafoundation.org/