Supporting Rare Disease Patients

Dear friends,

We want to share some good news and express our deepest gratitude for helping us purchase a medical aspirator for little Sofia, who has recently turned 1 year and 5 months old.

Sofia is the third child in the family of Natalia and Viktor. The doctors initially did not recognize Natalia's concerns about her daughter’s health, but when Sofiia was referred to the National Children's Specialized Hospital OHMATDYT, it was discovered that she has a rare and serious condition called Krabbe disease, infantile form. This is a genetic disorder that affects the nervous system and leads to severe issues, including the loss of motor skills, vision, and hearing.

By the time Sofia was diagnosed, she was already 8 months old, and the disease was progressing rapidly. The situation was further complicated by the fact that the family had to leave their hometown of Myrnohrad in the Donetsk region due to ongoing shelling. To continue Sofia’s treatment, the family relocated to Dnipro city, where she receives specialized medical care. Sofia and her mother Natalia have been living in the regional children’s hospital for several months now, as Sofia requires constant oxygen support.

Sofia’s family is eager to take her home from the hospital. However, in order to care for her at home, they need an oxygen concentrator, an aspirator, and a specialized pulse oximeter for in-home use, all equipped with batteries for uninterrupted use during power outages in the wartime in Ukraine.

Thanks to your generous donations, our foundation was able to purchase an aspirator with a built-in battery for Sofia.
Despite all the difficulties Sofia’s family is facing - an incurable disease, the war, living in another city - the support of the donors means so much to them.

Our foundation can support families like Sofia’s thanks to your charitable contributions to our project on the GlobalGiving. Your contributions make a difference in the lives of Ukrainians living with rare diseases and their families.

With sincere thanks,

Tetiana Mykhailova and CF Orphanni Synytsi team

Links:

• Sofia`s story