Help Siyona make it past her 2nd Birthday
As we come into the Holiday season with Tihar in Nepal and Thanksgiving for those in America, maybe we try giving back a little… Maybe we offer hope, encouragement and optimism where it’s truly needed. For those that already don’t know her story, please meet Siyona who at the tender age of 1 is fighting a battle that most of us cannot even fathom. She’s fighting to make it to her 2nd birthday. She’s fighting to make it past 2.
Type 1 Spinal Muscular Atrophy (SMA) is probably a disease that most of us don’t know much about. This is what Siyona and her family are battling. Type 1 is the most severe form of SMA. Children with type 1 have limited movement, can’t sit without support, and have trouble breathing, feeding and swallowing. Symptoms begin within months after birth. Most children with type 1 struggle to live past the age of 2 unless there is medical intervention. A gene therapy for SMA type 1 is showing promising results. The gene replacement therapy that goes by the brand name Zolgensma (previously AVXS-101) is a one-time infusion that delivers a functional copy of the defective or missing gene to affected cells.
As per an NPR article in May 2019 “The federal Food and Drug Administration has approved a gene therapy for a rare childhood disorder (Type 1 SMA) that is now the most expensive drug on the market. It costs USD $2.125 million per patient. But for those patients lucky enough to get it, it appears it can save their lives with a one-time treatment.”
That is all that we are asking for… a shot at a chance to live for Siyona. All of us in the US have heard “2 weeks to stop the spread” in reference to Covid-19, let’s turn that around this holiday season to be “2 weeks to spread love, hope and optimism”. We’re doing this push over the next 2 weeks through Thanksgiving Weekend (Nov 30) to spread as much awareness as we can and raise as much as we can with us having a fairly steep goal. I hope you will join us - members of the Colorado Nepali Community and our friends across the globe in trying to take a little burden off Siyona’s parents who are living this nightmare in Poland currently trying to give their daughter the best chance to come out successful in this truly cruel battle she is facing. We get that times are hard for everyone with Covid currently, but let us do our bit to restore faith in humanity. Let us all unite and get behind “Nepal’s daughter” Siyona. Everyone deserves a chance at a life and happiness. Let’s do our part…
ALL MONEY RAISED VIA THIS FUNDRAISING CAMPAIGN WILL BE DONATED TO SIYONA’s PARENTS. Thank you all! 
If you would like to get updated info regarding Siyona please join this Facebook Group where her parents provide updates:
https://www.facebook.com/groups/238340680767197/