The story of Marianthi who suffers from West syndrome

Marianthi is a 2-year-old girl who has been diagnosed with West syndrome (Epileptic encephalopathy), an extremely rare condition with onset in infancy that causes severe damage to the central nervous system. As a result, the little girl remains confined to a bed, unable to move or communicate, while she is exhibiting severe intellectual disability. As moths went by, the little girl frequently suffered from severe respiratory infections, as she could not clear oral and nasal secretions due to fact that she constantly remained in a lying position. She was often hospitalized and treated with IV antibiotics. Her daily life was quite challenging, since she also had trouble breathing. The doctors who cared for her strongly recommended that she were immediately submitted to an intensive respiratory and physio-kinetic therapy program, which would help improve her respiratory and metabolic functions and reduce muscle tightness and joint stiffness. They also recommended that the family acquired an adjustable bed, where the little girl would be able to lay in a reclining position and breathe more easily. Marianthi's parents were doing the best they could in order to find a way to afford the necessary treatments and orthopedic devices that would improve their daughter’s quality of life. However, that was impossible. Their health insurance only covered a small part of the expenses, and the mother could no longer work, since the little girl required 24 hour care. The family came to a dead end, so they decided to reach out to us for help. We paid a visit to the parents in order to evaluate the situation and they informed us about their needs in expendable medical supplies, medicine, orthopedic devices and physiotherapy sessions. We immediately organized the "Campaign for Marianthi’s rehabilitation", in order to raise the sum required for the child’s medical needs and for a year’s worth treatment sessions. Within a short period of time, our little friend began to follow an intensive physiotherapy program and from the very first sessions, the caregivers noticed an improvement of her metabolic and respiratory functions. We visited an orthopedic store and we purchased the adjustable bed as well as a great amount of expendable medical supplies that were required for the little girl’s condition. Furthermore, we came in contact with the drug store from where the parents acquired their daughter’s medicine in order to settle their debt, while we paid in advance for the total cost of a year’s worth medication. We also paid in advance for an annual home-based physiotherapy program. This way, the parents wouldn’t have to worry about the financial aspects; instead, they could focus all their energy in their child’s care. Together, we managed to provide to this family, emotional and moral support throughout their ordeal. But what's most important is the fact that we managed to improve a little child’s quality of life. We sincerely hope that Marianthi’s condition continues to improve, while we pledge to stand by this family’s side for as long as it takes!