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On a cold summer’s day in July 2020, Daria and Eduard Sakhno set out with their two new born from their home in Tavriysk, Kherson region, Ukraine. Their destination was an appointment with the pediatrician. It was a daunting 1-hour drive, but one filled with determination and hope.
Their daughter, Mariia only a few weeks old, had just been diagnosed with Spinal Muscular Atrophy (SMA) type 1. It was a blessing that Nazar her twin brother didn’t have the same disease, but a complete disappointment and two broken hearts of the two parents getting the diagnosis of SMA is devastating. Daria and Eduard wanted to see if they could get Mariia into a clinic for a drug called Zolgensma that they learned about shortly after receiving her SMA Type 1 diagnosis. This severe illness can be lethal for infants under the age of two and can be treated with just a single injection of Zolgensma medicine. The price of this treatment is 2,234,013 USD
Although there are inevitable ups and downs in raising a new born with SMA type 1, the parents have provided Maria and Nazar with unyielding love, perseverance and hope for the future. Much of this hope can continue as a result of your involvement. I am asking kindly, all around the world to support Mariia in this battle of life.
Together we could face this journey and battle.
Let's do it.
God bless you all!