Oskar and Katya Fuchs are brother and sister. Oskar is the eldest, Katya is the youngest. They live with their parents in Krasnoyarsk and love each other very much. Oskar and Katya are normal kids with normal childhood interests, but their parents have been living with anxiety and unusual worries for years because their children have SMA - spinal muscular atrophy. It's a genetic disorder in which muscles gradually lose their function, and the child grows weaker day by day, losing familiar skills.
Oscar was born on time, healthy. He developed normally until three months of age, and then something went wrong. After numerous examinations, Oscar was diagnosed. When the boy was 7 years old, his parents decided on a second child. The geneticists said that in their case it would be absolutely safe to give birth to a girl. But they were wrong. When Katya was a year old, she was also diagnosed with SMA.
We are not going to tell you how difficult it was for the parents with two seriously ill children. After all, now with support from the charitable foundations of the Vera Foundation, there is no despair in their home. Katya is a ray of sunshine. She draws, swims in the pool, sings in the choir and adores her older brother. Oskar is in seventh grade remotely, loves math and dislikes English. He loves nature. And thanks to his parents' efforts, in the summer the boy has trips to the countryside, walks in the woods and on the river.
After a course of medication "Spinraza", which both children were lucky to receive, Katya and Oskar need long-term rehabilitation to maintain their motor skills. The children's scoliosis is progressing, and they need special supporting braces, made individually for each of the children by an orthopedist. And Katya, who is actively growing, needs tunics - devices which allow to fix joints rigidly and slow deformity of legs.
Let's help Katya, Oscar and their parents to go on living and making plans for the future. Because we know there is one.
Verified by Tooba
Verified by Tooba
