04655, Kyiv
Polyarnaya Street, home 20, office 311
mariya.aylen@open-palms.com

Vorobiov Vasyl

vasul_5b62f2d8094d1.jpg

1 год

Диагноз: Muscular type 1 atrophy (Werdnig-Hoffmann disease)
Категория: Підопічні сім`ї
Pallіativ

Vita calls her one-year-old son Vasyl, it is more serious, she says. The kid just turned one! And he is in a big trouble already. Vasyl was diagnosed a spinal muscular atrophy, type I (Werdnig-Hoffmann disease), and he is not able to breathe himself. To put it mildly, the disease progresses from his birth and causes difficulties with breathing, sucking and swallowing, the kid is restrained, but his mental development and emotional state are adequate. He is developing as a usual kid; sometimes he is sad, sometimes he has fun, becomes naughty, feels everything, but cannot show it to his mom.

Vasyl'ko, who is only one and a half years old, already knows perfectly well what is a resuscitation department, life in a hospital, lungs artificial ventilation equipment. He also knows how it is to be without his mother. Type 1 spinal muscular atrophy is a very terrible disease. Today this malady is incurable, but it is possible to create maximum comfortable conditions for the child and for the family to have time together...

Thanks to the support of good people, Vasia, and his mother were able to escape from the resuscitation department and be at home. And yet his children's room resembles the resuscitation chamber too – with the apparatus for mechanical ventilation, the oxygen concentrator, the pulse oximeter, the medical suction cup, and inhaler, and bactericidal lamp – the baby is at home. Breathing, laughing, developing. But, unfortunately, while developing some skills, others are taken by the disease and they are vital...

How to live with a baby in such conditions? Only if you can rely on your friends’ support. There are many of us. We will not leave our friend in trouble, will we?

Новини підопічного