40-year-old Anna Doronina is a mother of two sons who have a rare genetic disease (SMA) – spinal muscular atrophy.

As a rule, the disease can manifest itself at any age. At first, a child is born healthy and no one knows that the baby is already incurably sick. Then the disease either progresses or stands still. But one thing is for sure – it affects motor neurons and leads to progressive weakness and muscle dysfunction.

Anya is raising two children with this terrible condition on her own. To add to the difficulty of her situation, she lives in war-affected village of Dachne in Eastern Ukraine. Like most people living in this area, each day is a struggle and a fight for survival.  To heat their house the woman has to go to the forest and pick up some firewood. She carries a bag with branches on her shoulders, dries them, and heats the stove. She has to keep up with this routine every single day – from autumn to spring while the house needs heating.

To do laundry, the woman has to heat water in a basin on a stove, pour it into a container that takes up the floor of the house, handwash and twist the laundry – the procedure can take up a half of a day.

Needless to say that the life is far from being easy for any  woman and a mother living in a frontline village. And it is unbelievably difficult for a mother with two children with disabilities.

When OB team came to visit Anna with a food bag, she was eager to share her pain with us:

 “Not long ago, Maxim still could walk but he can’t walk any more…  The situation is  getting worse – with every single day it’s becoming more and more difficult for my eldest son even to breathe and swallow. When he went to the first grade he started getting weak and he was getting a tiptoe walk. He was able to finish only one grade and by the end of the year he couldn’t move his legs. In such a short period of time, once cheerful and active Maxim was completely bedridden. Now he can only remember how he used to hold a spoon in his arms or even how he used to hold his head straight. His muscles are failing my 15-year-old boy. He understands everything well, hears, sees and dreams, but he just cannot move.

My younger son Vova is now in the 2nd grade. To my horror, I understand that the same thing that happened to Maxim awaits Vova too. He is already getting a tiptoe walk and the muscles of his legs are in constant tremor.

Our government does not support people with such rare diseases. We are trying to do some massages, but they do not help much. There is a medicine that could slow the deterioration process but its cost is just enormous for us. One month worth is $ 50. With my income of $88 per month, I can’t even buy medicines to treat both sons, let alone buy food, clothes and provide for other basic expenses.

Do the math for yourself. In order to regularly treat my children with this medicine, millions are needed in the long run… We don’t have the money, so I can’t even say that this life can be called “life”, it’s just struggle for survival. I have to wait in “God’s line” hoping that He will extend the life of my children … “- Anna shared.

According to statistics, the average life expectancy of people with ALS is 12 years. We do not know how much God has measured for these children. But one thing is for sure, when we brought some food to the family, it was a real joy for the boys.

Anna, Maxim and little Vova live a life where it would seem there is no Hope, and indeed, words of encouragement here had to be chosen very carefully.

But the Gospel, prayer and Jesus Christ always help to go through all life’s hardships – this is what we managed to convey to a woman who 24/7 alone copes with all fears, lack of money and total need. This is what OB team is bringing to Anna along with food.

Please, sign up for a monthly donation to support people in need like Anna here:  http://helpua.org/en/home-en/

Anna Chaban, CBN-Emmanuil