I am writing on behalf of the family of 4-year-old Cypriot little girl Ariadne Neophytou, who was diagnosed with the very rare MOGHE syndrome (Mild Malformation of Cortical Development with Oligodendroglial Hyperplasia and Epilepsy), which causes multiple, daily epileptic seizures (more than 30 per day), resistant to any medication (there are only 50 cases worldwide).
This is a rare type of significant brain malformation that causes focal drug-resistant epilepsy and requires constant and specialized care. She has already undergone three operations in Israel without improvement. Her condition has worsened, as the seizures now affect both cerebral hemispheres.
The only hope now lies at UCLA in California, where the innovative RNS (Responsive Neurostimulation System) method is being applied. The family has already been in the US since June.
After all the necessary tests were performed, a corpus callosotomy operation using the LITT method was performed on August 22nd, to limit the spread of the seizures to 1 hemisphere of the brain because the seizures had already exceeded 5 minutes and had now become life-threatening. With this operation, they hope to identify the focus for targeted treatment, such as RNS or some other specialized intervention.
Given that until the appropriate treatment is found in a country that can provide it, and the family is faced with time-consuming bureaucratic red tape, valuable time has been lost and the treating doctors are fighting their own battle against time so that the damage is reversible.
The little girl is undergoing specialized and expensive outpatient rehabilitation treatments which are not covered by the state.
Although the Ministry of Health covers the medical costs of the surgeries and pre-surgery, all other expenses — daily treatments necessary for her survival, transportation, nutrition, daily care — are entirely borne by the family, and the expenses are unbearable. Along with her 2 parents, her 9-year-old brother is also there.
The parents have given up their jobs to be by their side as the little one fights her own battle, and thus have no other financial resources.
So in collaboration with the Alkinoos Artemios Foundation (https://alkinoos.org/ ) a Pancyprian Fundraiser (with license number N.P 49/2025) was started a few days ago to help the family. There are all the official medical documents and a full presentation of the case to anyone interested.
With appreciation and thanks for raising awareness towards a small child who deserves a life with less pain and more dignity.
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