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 ventilation 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 position 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 receive Zolgensma.
UPDATE-Utilization of fund.What if?
Lastly what is the plan if target is not met? How will the raised funds be utilised?
First of all, seeing the support of all wellwishers all around the globe, I don’t see anything why our target won’t be met. Siyona deserves life and there are so many prayers and efforts that can’t be unheard by the God. We will achieve the target. I am her father and I have seen her suffering everyday and if any mishap happens or funds couldn’t be raised, then the funds will be utilised only for the palliative care of Siyona. I am a Nepal based doctor and I have seen how difficult is there for a Nepali patient to fight SMA. The remaining funds will be utilised to raise a SMA foundation in Nepal that will work entirely for the upliftment of SMA patients in Nepal including their palliative care. We are already on this process and the legal formalities are delayed by covid. We will soon update the process.
How you are related to your beneficiary?
Hello again, I am Anish Kumar Shrestha and Siyona is my niece.Her father Dr Sandeep Shrestha is my father's sister's son.While donations are being done by the generous donors, I have to regularly withdraw the amount. I have attached my bank's account number and other information so that the money will be directly be deposited in my bank account.When the target amount reaches we will directly deposit that amount with Novartis's Avexis with together work of clinic of special children and parents.The drug needs to be purchased first and the remaining balance will be used for medical treatment costs at the hospital.Incase if the target amount doesn't meet up the parents Nepal bank account will be directly deposited from my US bank account.The fund will be used for palliative care of Siyona plus a SMA foundation will be established that will work entirely for the upliftment of SMA patients in Nepal including their palliative care.
If you require further documents and information we shall provide that .Please contact Dr Sandeep and Aleena for any more required documents.
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