Save Baby Irina's Life

Earlier this month my friend Elena called me and shared a heartbreaking story of her baby's illness.  I could not stop crying.  I decided to try this platform to help raise funds to save my friend’s child, a 1.4-year-old beautiful girl, Irina, whose life literally depends on your kindness.

October 13, 2018 was the happiest moment in my friend’s life- the day her beautiful girl Irina was born. The first year of Irina’s life was full of joy, happiness and laughs. The girl was growing and seemed perfectly healthy.  Family became alarmed when they noticed a bit slower development, Irina could not roll from belly to back easily, could not sit up herself without support. Doctors kept insisting that the child was fine and would catch up by her first birthday.  But she did not...in fact her muscles were weakening each day and in late 2019 while giving Irina a bath, parents noticed that she stopped moving her legs all together. Shortly thereafter, a horrifying diagnosis was made:  SMA (Spinal Muscular Atrophy) – a rare, genetic condition. Children with this diagnosis cannot develop muscles and cannot stand or walk unaided. The condition worsens with time leading to full loss of function, inability to breath and death, if untreated. 

That is the when my friend’s life turned upside down. She soon discovered that there is no proper treatment in Russia. Just a few years ago a new genetic treatment was developed “Zolgensma”, which is administered in the United States. The treatment is very expensive, $2 - $2.5 mil. More importantly, the treatment should be administered  before the child turns 2 years old. Irina is already 1.4 years. As such, time is running out.

My friend is devoting every minute of her life fighting for her baby: countless exercises, physical therapy, swimming, etc., which even bring some progress. Irina is a beautiful, intelligent and strong baby-a real fighter, she even started to move her legs a bit but without proper medication this illness is irreversible.   

I ask you to make a small donation to contribute to saving the child’s life. 

I live in New York with my husband and 2 children and remain at your disposal should you have any questions about Irina and the ways to help her.  

Thank you very much for your support and help.  I also thank everyone who shares and spreads the word!