Two two-year-old girls, Milana from Chernihiv Oblast and Kamila from Kropyvnytskyi, were given a chance to be saved thanks to the launch of the first treatment program in Ukraine for children with a rare disease — Alazhyl syndrome. The initiative started in Lviv at the St. Nicholas Children's Hospital.
Alaghil syndrome, a genetic disease that attacks the liver, will now be treated in Ukraine thanks to a special program. This disease leads to the destruction of the biliary tract, the accumulation of bile in the liver and serious complications. Liver transplantation used to be the only possibility of salvation.
The treatment program was made possible thanks to the allocation of 240,000 dollars by the Slovak company "BioMedika" to provide two patients with the necessary Livmarli drugs. This newest drug, which is successfully used in Europe and the USA, should show its effectiveness in the treatment of Alagille syndrome in Ukraine.
Two young patients, Milana and Camila, were given a chance to be saved thanks to this program. Their condition was severe, and the diagnoses were incorrect, because Alaghil syndrome is difficult to determine without complex genetic diagnosis. Although the disease has already progressed due to the lack of proper treatment, thanks to the joint efforts of the surgeon Halyna Kurylo and the support of the BioMedika company, Milan and Kamil will have the opportunity to be treated with the expensive drug Livmarli for the next six months.
