Help Siyona fight Spinal muscular atrophy

48041364_1589388572940068_r.jpeg48041364_1589388623255304_r.jpeg48041364_1589388644997885_r.jpegThis gofundme page is for Siyona-a sweet 8 months old baby girl.I have initiated this page on behalf of her family who live in Nepal, a small beautiful mountainous country in Asia.She had been recently diagnosed with a rare genetic disease which requires immediate treatment before her second year of life.She is suffering from Spinal muscular atrophy or SMA Type1 .This is the most common genetic cause of death in infants and it affects the muscles of limbs, swallowing and respiration. Siyona has the most severe form of this disease, Type 1. She is already 8 months old, still she can’t hold her head up, roll sideways or sit with support. She has difficulty in feeding with frequent aspiration because of weak pharyngeal muscles. She has difficulty in coughing out secretions due to weak respiratory muscles and even a simple viral flu can be fatal for her. Without treatment, Siyona may not survive past 2 years of age. She needs a gene therapy drug called ZOLGENSMA which builds her defective gene and strengthen her weak muscles. But the availability and affordability both are challenges for her family. They  live in a poor country where Government and insurance company won’t provide them and therefore they need to collect money for their daughter.. Zolgensma costs around 2.1 million USD with additional expenses totalling to about 2.3 million USD. Please dear all, help me to collect funds for Siyona. She wants to see life and fulfill her dreams. Your small contribution can make a big impact on Siyona and her family. This campaign is dedicated entirely to Siyona.

Below is the story from Siyona and her family. kindly bear with us.

Our daughter Siyona took step in this world on 12th of September 2019. I still remember that day. We were very happy as i hold her in my arms. She was a healthy baby girl and i still remember her bright and big eyes staring me. We immediately fell in love with her and start thinking of her future. We thought of providing her every needs of her life- a good education and most important a better human. Everyday with her went on so fast when we realized she already turned 4 months. I then began to realize she was not able to hold her head nor turn sideways. She was breastfeeding normally and was gaining her usual weight. Some of our family members told this is normal and she will be be holding her head in few months. We believed and carried on dreaming of her bright future.

Days passed on and she was now 5 months. Still she was not holding her head. Now we were worried,so visited our doctor. Our doctor examined and did some neurological exam, few blood tests and a brain scan. Everything was normal and we were told she might be having a benign hypotonia of infancy. Just a bit physiotherapy and nothing much to worry about: I still remember my doctor words. We were happy she was alright and began her physiotherapy. Now she was 6 months, still hypotonic. We knew something was not right and again visited our doctor. Now our doctor advised us to visit a senior neurologist and we did so. I still remember that day, the saddest day of our life, the day when our dreams were shattered. The neurologist after assessing our child and looking the prior reports immediately told us she might be a having a neuromuscular disease only to be confirmed by genetic disease and most probably our child might be having the severe form of the disease. That was the day when we first heard of this disease called SPINAL MUSCULAR ATROPHY. Blood was drawn and sent for genetic testing and we returned with heavy hearts.

I was very tensed and started looking after it in internet. I was told about it a bit by my neurologist. It is a progressive neuromuscular disease that gradual weakens the muscles of limbs,swallowing and breathing. You can imagine the outcome. My child can’t sit up nor walk stand, she will not be able to eat and drink and finally not able to breathe on her own. Without timely treatment most of infants with severe form of SMA will be on permanent ventillator within a year of life and rarely survive beyond two years. I was always praying to god that our reports will be negative but i was wrong. Finally got the reports that showed my daughter Siyona had type 1 SMA. My neurologist told me the prognosis and gene therapy was the only cure. Gene therapy drug called Zolgensma costs nearly 2.1 million usd and we are no longer in a postion to afford. We need your support to afford my daughter's treatment. I wish to see her stand and run and fulfill her dream. Please donate for my daughter and fulfill her desire to live and achieve her dream. We believe Siyona is one of the luckiest to recieve Zolgensma.

Donations ()

  • Bindu Paudel 
    • $50 
    • 20 mins
  • Anonymous 
    • $15 
    • 23 mins
  • Pushpa gurung 
    • $25 
    • 1 hr
  • Anonymous 
    • $15 
    • 1 hr
  • Anonymous 
    • $80 
    • 1 hr
See all

Fundraising team: Team Siyona (5)

Anish K. Stha 
Organizer
Raised $10,417 from 300 donations
San Pablo, CA
Bikash Malla 
Team member
Raised $961 from 24 donations
Asmita Dhaubhadel 
Team member
Raised $617 from 28 donations
Sanjay Maharjan 
Team member
Raised $564 from 14 donations
Lal Kaji Shris 
Team member
Raised $185 from 5 donations
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