Oleksii Glushenko, 7 y.o.

Mother of the boy addressed us with these words:

"My son is a friend to a child in a family where the first child was born, a daughter named Sonia, who is 12 years old. My son, Łośka, was born extremely premature with a weight of 1000g. He went through a long journey of upbringing in hospitals in Kyiv. And everything would have been fine if his condition had not suddenly deteriorated! At first, no one understood why this was happening, because he had good intellectual and physical results. I will never forget his smile, which gave me so much joy!

How skillfully he moved and played with toys! But all of this was taken away by terrible seizures that couldn't be stopped by anything, and no medicine improved his condition. That's when we started our uneven fight.

We were endlessly diagnosed in Germany, Spain, and finally, after 2 years, we were given a diagnosis. It was a very rare genetic mutation, which children usually do not survive. But my New Year's child, born on December 31, 2015, has been with me for 7 years now. This disease is completely unknown to doctors, and there are no methods of treatment or support. That's why I try to find something myself that can alleviate his condition.

Over time, Łośka was fitted with a vagus nerve stimulator (VNS) in Ukraine, for which money was raised from all over the world, and it greatly improved his condition with seizure attacks, and now we cope without resuscitation! Later, my son lost the ability to eat independently, and we had to install a gastrostomy and put a cuff in his intestines to prevent constant vomiting. Along with this, there was also a tracheostomy, so he wouldn't suffocate from the constant flow of saliva, which required care every 5-10 minutes.

We continue our life, and I infinitely love my child, providing him with comfortable conditions and dignified care 24/7."