This is a story of a very special 14-year-old girl from Cyprus, who loves to play and gives hugs to anyone she meets. Her name is Maria-Foteini. She lives in Nicosia with her father Konstantinos Kallimachos, a writer and teacher, and her mother Antigoni Kokkinou Kallimachou, a deputy head school teacher.
At four months Maria-Foteini started having seizures. By age 3 she was having hundreds of seizures every day. Although most were brief, many lasted over 30 minutes and often Maria-Foteini was taken to the nearest
children’s hospital. She stopped speaking and began having trouble walking without falling, a condition called ataxia.
She was examined by paediatric neurologists all over Europe but the cause of her seizures remained unknown. Many antiepileptic medications were tried, with very little improvement.
Finally, when Maria-Foteini was 3-years-old, she was taken to the USA, where she was diagnosed with an intractable form of epilepsy – Dravet Syndromewhich is caused by a genetic mutation. There is no cure and Maria-Foteini will
not outgrow her seizures.
Ketogenic Diet Reduces Maria’s Seizures
In 2005, she started the ketogenic diet, a medically prescribed high fat/low protein and carbohydrate diet. The result was a dramatic reduction in seizure frequency. After two years on the diet, there was a miracle of seizure-free days. Shortly after starting the diet, she was also prescribed new antiepileptic medications. With improved seizure control, she has been able to learn new skills. She speaks Greek and English, sings, dances and paints.
Compared with other children with Dravet Syndrome, Maria-Foteini maintains a large part of her mental capacities. She needs 24-hour supervision in order to deal immediately with any epileptic episode before it evolves. However, Maria-Foteini has developmental retardation and each day takes seventeen different medications
along with her extremely complex medical diet. She still has ataxia as well as fine and
gross motor delays.
Despite everything her parents do, Maria-Foteini could still have a seizure at any time of the day or night. This makes it very hard for Maria-Foteini and her parents to do many of the things others take for granted!