Content of the support: Helping to pay for the drug Miglustat that Sergei needs.
Amount of the support: over EUR 80 000 per support period.
Duration of the support: Mai 2024 – Mai 2025*.
*The Children’s Foundation will normally extend support at the end of the support period on the basis of need.
Introduction
Sergei (2004) was 13 years old when his walking suddenly worsened. His family doctor referred him to a neurologist, but tests showed that there was nothing wrong with his motor system and no one understood why his walking was becoming increasingly difficult.
“He was then tested for genetic diseases and in 2017 he was diagnosed with Niemann-Pick type C disease,” says Sergei’s mother Diana. Niemann-Pick type C is a rare genetic disorder that damages the central nervous system and disrupts the regular intracellular transport of lipids.
“Two years ago, Sergei’s disease worsened. Last year, when he finished ninth grade, he was able to go to school by himself, but not anymore. Sergei can no longer walk on his own,” says Diana, the boy’s mother.
Sergei used to be treated symptomatically, but now doctors are recommending Miglustat, a drug that helps slow the progression of the disease and significantly improves his quality of life. However, the medicine is very expensive and the child’s family cannot afford it.
The Children’s Foundation, with the help of good donors, is helping to buy the drug Miglustat, which Sergei needs, for more than €80,000 over the support period.
Sergei has been receiving treatment with the help of the Children’s Foundation since May 2022.