The emotional appeal from mother Maya Keshishyants for her daughter
Born on October 31, 2019, eight-month old baby Ada Keshishyants is suffering from a life-threatening, rare genetic disease called Spinal Muscular Atrophy (SMA) Type 1.
Children with SMA die slowly, rarely reaching two years of age. SMA attacks the nervous system, causes muscle atrophy, and as a result, the spine curves causing severe restrictions with breathing. To learn more about this deadly disease, please visit here.
But there is hope for Ada. One shot of Zolgensma can help treat, and even, cure her disease if received in time, but it costs over $2 million. However, Novartis, the drugmaker of Zolgensma, has refused to lower the price despite the pleas from the family. $1.1 million has been raised so far ($800,000 received with a $300,000 pledge/promise to donate), but it's not enough, so SOAR has launched a global campaign to raise another $1 million.
Living in Kislovodsk, Russia, her family and friends are doing everything they possibly can to raise funds to save this precious baby. But given the exorbitant cost of Zolgensma, they are unable to cover the cost of the treatment on their own. Russian government health organizations have rejected their requests for help, and now we are their only hope.
As the disease progresses, Ada's health is quickly declining. Due to the COVID-19 pandemic and flight cancellations, the United States is able to send the shot to Russia so Ada does not have to travel to the US.
DONATE above, or help SOAR fundraise for Ada with your own personal campaign page by clicking "Start a Supporter Campaign." Fundraising is easy - share your personal campaign page with your friends and family on social media, via text or email and request their support to help save Ada's life.
SOAR continues its good work of supporting disadvantaged Armenian children with severe disabilities. All donations will be managed by SOAR, and no funds earmarked for Ada's care will be transferred to an outside organization. Surplus donations will be used to establish the Ada Keshishyants Fund to benefit special needs children housed in Armenia's orphanages.
SOAR (Society for Orphaned Armenian Relief) is a 501(c)(3) non profit organization. Your donation is tax-deductible to the full extent allowed by law. After donating online, the receipt for your donation will be emailed to you real-time. For all inquiries and if you prefer to donate by check or wire, please write SOAR Executive Chairman George Yacoubian at firstname.lastname@example.org.