Ruslanchik (Ruslan) is a bright and cheery boy. From the moment you meet him and his family you can tell that they are a very loving family. That’s how at first sight we were covered in goose bumps and admiration. Ruslan is almost always full of life and constantly smiling – always positive. It is in these hospital walls that Ruslan is held captive. His mother, Sveta, prays for help.
The reserve unit with which Ruslan breathes at home broke. The company in Germany said that repairs would cost 2,535 Euros – an unrealistic amount of money for this family. At any moment while at home, Ruslan could be in need of oxygen. The main ventilator is broken and he is using using the previous ventilator.
Ruslan is an only child. Before his birth, his mother Svetlana was infertile for 18 years. Ruslan was born on time and healthy with the help of a C-section.
For the first four and a half months everything was wonderful, but then Ruslan stopped developing his motor skills (he wouldn’t turn over, crawl or sit up). The pediatrician reassured the family and said that sometimes boys are lazy and take longer to develop. When Ruslan was eight months old, we received the diagnosis of spinal muscular atrophy – Hoffman.
For the first two years of his life Ruslan did not have any health problems. He just couldn’t walk, but could sit, eat and speak. When he was two he couldn’t stop talking – he knew many poems and loved to recite them. But then he had bronchitis and in a month had a serious case of pneumonia with respiratory failure, intensive care and was on a ventilator, but he was eventually able to get healthy. In 2014, he had a tracheotomy and was told that he would need a ventilator the rest of his life.
Spinal muscular atrophy is a rare, autosomal recessive hereditary neuromuscular disease caused by the progressive denigration of spinal cord cells which leads to weakened muscles. In simple terms – Ruslan’s muscles are so weak that it is difficult for him to simply breathe and the curvature of his spine is starting to prevent him from breathing.
His mother, Sveta, wrote about her life with her special son:
“I had to learn how to live differently, listen and feel Ruslan’s quiet speech. He cries and enjoys life all without making any sound a mother can hear. The little guy can neither sit nor stand and also has a chest deformity and misaligned spine. After the tracheostomy he started to have problems with his gastrointestinal tract and now there are other problems. No matter what, I love my dear son.”
We, as a collective group of volunteers at the fund, are joining together to answer Sveta’s pleas for help. We understand that a hospital is not a place to live. A child should live at home – play, sing songs and read. A child should not live in fear and watch other children die in the hospital. Give Ruslan the gift of a happy and healthy childhood with his mother and father within the walls of his family home. The amount of money we need to collect is 72,000 hryvnia – that is the cost of living at home.
Report on received donations and expenses
