My fight for the chance to breathe

Looking at the photo of a smiling young girl, you would never say that her life is threatened by two terrible diseases. Thirteen-year-old Uliana loves to write texts, participate in competitions, and weave beads. This is one side of her life. The second is spinal muscular atrophy and progressive scoliosis. For the operation, it is necessary to purchase an expensive implant.

Uliana has a dream, and it is not a new fashionable dress. She dreams of having a straight back, getting rid of constant pain and life threatening. Due to scoliosis, the chest cell compresses the internal organs, making it difficult for the heart and respiratory organs to work.

Scoliosis is not the only disease that hangs over a child like a sword of Damocles. From the first years of life, Uliana and her brother Kolia had increasing muscle weakness and hypotonia, then it became difficult to climb the stairs, their hands began to tremble. Ultimately, Uliana developed scoliosis and subluxation of the hip joint. The reason was found out only in 2021: both children were diagnosed with SMA: spinal muscular atrophy. This genetic disease progresses gradually, affecting neurons in the spinal cord, causing muscle atrophy and impaired breathing and swallowing.

In 2016, the world's first drug that stops the progression of the disease was invented. Uliana and Kolia already received four loading doses of the drug Spinraza at the beginning of treatment, now every four months they are injected with a maintenance dose into the spinal cord. If Uliana continues treatment with Spinraza, she will retain the ability to walk. The cost of treatment per year is about $380,000.

Unfortunately, the humanitarian program ends in February. The Ministry of Health is currently refusing patients funding for Spinraza. If there is a break of six months or more between injections, the treatment will have to start again (and pay even more). In order to save the children, the family will be forced to leave Ukraine.

For now, the goal of Uliana and her family is to overcome further curvature of the spine. Only a complex operation at the Okhmatdyt Hospital can help.

The family is unable to purchase implants on their own, all their resources are spent on accompanying medications and regular rehabilitation courses for both children.

Dear friends, let's raise money to buy a set of Socore implants. Every hryvnia is important and will help save Ulyana!