Curative oxygen for Artem

Artem is a unique child. As in Ukraine, there are only about two hundred children like him. The common diagnosis unites these children – SMA – spinal muscular atrophy. This is a ruthless disease that gradually takes away all the skills of a child. Therefore, the life of "SMAleys" (children with SMA disease) is a daily struggle and faith in a miracle. The more the disease makes itself felt, the more special equipment appears in Artem's room. It is still impossible to cure the boy, but if to organize the right care, it is possible to prolong his life. It means so much! 

Artem is a long-awaited child, so wanted and loved! Up to six months he grew up, like all healthy children. And suddenly the boy loses all acquired skills – he does not hold his head, does not sit, does not rest on his legs. After a genetic analysis, everything cleared up: Artem has "SMA" - spinal muscular atrophy of the 1st form, the most severe. This is a genetic disease at which there is a gradual defeat of all nerve cells, which leads to the loss of all skills, up to the inability to swallow and breathe on his own.

Our little SMA-Artem can sit with support and keep his head, and with this diagnosis, it is a great achievement! He likes to watch cartoons, draw, play board games. He knows almost the entire alphabet and numbers! And Artem dreams about a four-legged loved one – a dog. At the moment, the most important thing is to maintain Artem’s condition at the same level, not to allow the disease to progress. Therefore, the boy’s morning starts with gymnastics, massage, breathing exercises with the ambu bag. In the evening he has swimming, joints warming and stretching. Artem’s diet includes the obligatory intake of vitamins, amino acids, and special nutrition. Mom collected all this knowledge by herself since there is no protocol for managing patients with SMA in Ukraine.

Unfortunately, the disease progresses. The lack of abdominal and back muscles causes deformation of the spine and chest, which leads to the problems with breathing and increasing respiratory disturbance. Artem simply cannot live without special equipment at home! The boy’s room is already equipped with a device for non-invasive ventilation of the lungs and cough assist. Artem needs oxygen concentrator in order to have comfortable living at home, but not at the resuscitation department. He also needs suction device removing mucus from a respiratory passage, because Artem can’t cough.

Despite prognosis and thanks to the selfless care of parents, Artem lives! Give this wonderful boy an opportunity to live as long as it is possible. Live at home!

Name: Shevchenko Artem, 03.07.2014

City: Vasylivka, Zaporizhia region

Diagnosis: spinal muscular atrophy of Vending-Hoffmann (type 1)