Help Mariia-Tereza fight SMA 1 type

I am addressing you on behalf of my close friend Olga Kudryavaya who lives in Ukraine and whose almost 7 month old daughter was diagnosed with spinal muscular atrophy type 1. The state (Ukraine) can not help either with treatment (Zolgensma is not available in Ukraine), nor with money (over 2 mln USD). The parents have no other choice than try to collect this amount by themselves. 238 000 USD have already been raised with the help of family, friends, social media, this platform. Much more is needed. Please, help us collect the needed amount.  
Thank you so much in advance!

 

Mariia-Tereza was born June 15, 2021 a healthy child at first glance. But at the age of 5 months - November 24, 2021 she was diagnosed with a terrible diagnosis of SMA type 1 (SMN1 gene mutation). This is a rare genetic disease, Spinal Muscular Atrophy, that causes muscles to become weak and waste away. Every second destructive changes take place in our baby’s small body, her motor neurons die making muscles stop working, which eventually leads to atrophy. Lack of motor neurons damages not only arms and legs, it also affects swallowing, breathing and heart muscles.

 

 

In Ukraine the diagnosis of SMA sounds like a sentence to death. The country does not have a state program that finances SMA children and adults yet. Many people are trying very hard to change this situation, but time flies. And time is our top enemy now. One month of life without treatment means minus one skill. We need "ZOLGENSMA" injection as soon as possible. We have maximum 1 year to save our daughter's life.

 

This is the reason why we are begging for your help to save our daughter. As her mom and dad we have been doing our best, but without your help we cannot do much. YOUR SUPPORT IS URGENTLY NEEDED.

 

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