Siyona Shrestha a 10 months old Nepali baby girl from has been fighting for her life. She has been diagnosed with a rare fatal genetic disease called Spinal Muscular Atrophy. Type 1. A fundraising campaign has been conducted by her well wishers family with a hope that the cost for the treatment would ever be achieved. Doctors have told that without treatment she mightn’t be able to live past her second birthday.
Dr Sandeep Shrestha and his wife Aleena Gurung Shrestha(Nurse) welcomed their first baby on 12th of September 2019. It was the happiest time of their life as Siyona Shrestha came a gift of god.During her 6th months of age, she begin showing unusual signs and symptoms of a neurological disease.A diagnostic test was performed and turned the parents happiness into a sad phase time due to a confirmation of the SMA Type 1.
Several medical tests done at Kathmandu, Nepal and India verified the fatal neuromuscular disease. They consulted with the pediatric neurosurgeon from both countries where they them that the treatment is only possible at United States after they would be able to purchase the drug for gene therapy. A miracle drug had been approved by the FDA in United States on 2019 which is called Zolgensma. But the sad truth about the life saving drug came at a massive cost of 2.1 Million USD dollars. Upon hearing this, a normal family from a developing country Nepal who both belong to a medical profession themselves had to ask for answers on how can the treatment can ever be achieved. Coming out in social media and seeking humanitarian support from the well wishers around the country and the world was the initiative which they have taken in a hope to save their loving daughter Siyona Shrestha.
——————————————————————- Please join the journey of Aleena Gurung Shrestha and Dr Sandeep Shrestha. Treatment hospital/clinic– Clinic for Special children, Pennsylvania 535 Bunker Hill Road PO Box 128 Strasburg, PA 17579 Phone: (717) 687-9407 Fax: (717) 687-9237 firstname.lastname@example.org