From Eve’s Mother

We live in Ukraine in the Odessa region. Eve was born on 05/20/2018 and she appeared to be a healthy child.  At five months old, she fell ill with a viral infection, after which she began to fade.  It took us 6 months to find out what was happening to our girl.

The words of the doctor were “The child will not develop.  The only thing you can do is adequate care.  Humble yourself!”   Then the earth went out from under me.  Our hopes disappeared when Eva was diagnosed at almost one year old: GM1 gangliosidosis.
There is no cure.  I stood and looked at the doctor and did not understand what she wanted to say.  Life is so unpredictable.

Now Eve sees poorly, but she can still hear and she feels every touch.  She practically does not move, but we know when she is well and when she is not.  She adores her older sister.  Eve smiles at us to show that she understands.  And this smile makes our day.

The most difficult thing is to accept the inevitable and try to live with it, to love and care.   We want to make life as easy as possible for our sweet dear girl.  She loves when we talk to her.  She calms down and falls asleep when she is stroked on the head, on the back, kissed by her small hands, kiss on the cheeks, nose and eyes.

The prognosis is unfavorable, but I really want Eve’s life to be as happy and as long as possible.  We have not yet found other Ukrainian babies.  As a result, we feel very alone as we face this illness.


We love you, our angel .
May 20th, 2018   August 11th, 2019