Story of struggle and hopes

One of Nepal’s largest online fundraising drives to defeat a deadly disease raises 140 million rupees in months

Published On: December 1, 2020 11:00 AM NPT By: Republica  | @RepublicaNepal

KATHMANDU, Dec 1: Saving Siyona Shrestha, a 14-month-old baby girl who is gradually losing her strength to a rare disease, was solely her parents' battle until six months ago. Despite being a doctor and nurse themselves, Siyona's father Sandeep and mother Aleena had heard of the deadly 'spinal muscular atrophy – type1' for the first time. Their baby was going to live for two years (Sept 2021), unless a very expensive treatment, available only in the USA, is provided.  More than 250 million was needed. Even selling off all their assets wouldn't cover the cost. Their happiness crumbled. 

Siyona is now 14-month-old. And the story is different. After Republica published the story in August, thousands of Nepalis from across the world have been pouring in their love and support for Siyona. Thanks to the donors from Australia, Canada, Hongkong, Malaysia, Singapore, Japan, Germany, Poland, UK, USA, Qatar and Kuwait half the target amount has already been raised.

According to Sandeep, this is a humbling experience to see people getting connected to Siyona. This has made him ‘extremely hopeful’ of Siyona getting the treatment on time. 

Sandeep and Aleena had decided to go for fund raising as their last resort. They were not sure whether that would work, however they put their heart and soul on it. The beginning days were tough and confusing. It was hard to keep 'cheap YouTubers' at bay, but it was also important to send the message to the people out there. The couple felt dejected many times. But they got up and fought back. When Republica first reported the story in August, they had raised 25 million rupees, and the couple felt a sense of urgency to raise the money quickly.  

"The scenario is different now. The donors directly post on the Facebook wall we created in Siyona's name. No matter the amount, it is posted and we have a team of our relatives who have been generous enough to take care of the digital campaign," Sandeep, who is in Poland with Siyona for treatment, said. "The treatment they provide does not cure Siyona, but only stabilizes her health, but this was also important, so we are here for sometime," he added. 

Donors, be it individuals or groups, post interesting ‘stuff’ on “Team Siyona SMA” Facebook group, which has 58K members. Singers, artists and organizations have also come forward to appeal for more support.  Siyona cannot speak or move on her own due to the deadly disease, but she has indeed ignited compassion in thousands of hearts. “Let's at least pray for Siyona, if donating is not easy,” wrote one supporter.  


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