Save Nika Aleksanyan @nika_smaylik's life! SMA-1

This fundraiser page for the daughter of my friend and classmate Emma Aleksanyan. Her daughter Nika was diagnosed with spinal muscular atrophy (SMA) type 1. Nika is in dire need of Zolgensma - the most expensive drug on the market. It costs $ 2.2 million. Zolgensma is a single shot with high efficacy for kids with SMA under 2 years old or under 21kg. With Nika's growing everyday, we have a fight against time. Nika and her family live in Russia. And unfortunately, Russian Government Health Organizations are not assisting in getting Zolgensma for Nika.



EMMA's LETTER
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I will never forget the first time I saw Nika’s eyes. She smiled at us almost right away.
Motherhood is a deep thing, it’s another dimension of caring and loving.

I remember the day of her diagnosis clearly. It got dark, cold, and sticky in the room… I remember the doctor's lips moving in slow-motion saying that Nika has Spinal Muscular Atrophy.  The more he was explaining the darker and stickier it was getting in the room.

My soul hurt, I had words and tears boiling in my throat. But I had no time to feel as we had to stay strong and act fast, Nika needs to start her treatment immediately. Because every day counts, every moment, every motor neuron.

Spinal Muscular Atrophy (SMA) is a neuromuscular disease, which causes progressive loss of muscle strength that affects the ability to move, swallow, and breathe.

As the geneticist explained, in simple words, each of us (my husband and I) have one defective/mutated survival gene of motor neurons 1 (SMN1). This gene is responsible for the production of a protein that controls our muscles. Nika inherited both of our defective genes. 

As of now, Nika can't walk or sit on her own, she keeps trying to hold her head up, as she is eager to learn about the world. She loves hearing other kids play and laugh, she usually looks in their direction and always smiles. Unfortunately, Nika's breathing worsened lately and she needs a breathing machine to help her sleep at night.

We don't have a second to lose as Nika is approaching her 2nd birthday, and the miracle drug Zolgensma can be administered only before 2 years old. Zolgensma is a single dose treatment that is designed to replace the missing or defective SMN1 gene with a functional copy that produces the SMN protein, thereby improving the function and survival of motor neurons. Zolgensma can save Nika's life if done in time. 

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We need the support of volunteers who can help us during this fight. We refuse to give up as we have Nika's beaming eyes looking at us with love. 


Can you please share Nika's story or donate today?
Emma and Nikolay are fighting against the clock for their daughter Nika's life.   

https://www.instagram.com/nika_smaylik/  or https://www.instagram.com/savenikaaleksanyan/