Belonogova Arina

For seven years of her life little Arina from the Ivanovo region has been fighting with epileptic seizures happening every day.

 The child was pre-term, born on week 37, she weighed 2700 g, and her height was 49 cm. In the unit for premature born children the girl was examined. The doctors found out that she had grade 2 ischemia, so she was prescribed with treatment. Arina was discharged as an absolutely healthy child.

 In a month Arisha’s parents started noticing slight twitching of certain body parts of hers. With each day seizures were becoming worse, so the girl was taken to a neurologist, who identified seizures. Arina was admitted to a hospital. After examination she was prescribed with anticonvulsants. “I didn’t know back then that those seizures were so dangerous. I thought that we were going to take some pills to make it all go away... but those seizures never stopped, and she still has them”, — remembers Arina’s mother.

 Arina was developing well: she was able to turn on her side, then on her stomach, she could lift her body a little and started trying to sit down. There were no signs of developmental delay the physicians talked about. The girl’s parents followed all treatment recommendations. They relaxed a bit seeing their child growing and developing so well. However, the disease progressed, and the delay in development became noticeable when she turned one. Despite the fact that the girl started trying to sit down from the age of six months, she was only able to sit down properly when she turned one. Rehabilitation was forbidden, and the parents were doing therapeutic exercises at home. Arisha learned to move around the crib. Her parents were waiting for her to take her first steps, but she only started walking at the age of three because of lowered body tonus.

 Every three months the child was hospitalized and treated with changing medications. At the age of 11 months Arisha underwent MRI, but it showed no serious changes. The reasons of seizures were not determined.

 Parents were looking for treatment options for their daughter on their own, visited multiple epilepsy specialists. Every one of them offered a new scheme of treatment. They underwent treatment with a hormonal medication, sinakten depo. According to the girl’s mother, going through this treatment was hard for Arisha: she kept moaning, ate a lot, her body was swelling, she barely moved. The parents wanted to believe that all this suffering was not in vain but unfortunately the treatment did not help.

 When Arina was three, she experienced a strong kickback in her development. The girl stopped walking, sitting down, almost stopped eating, so she was admitted in a hospital to undergo yet another examination and treatment.

 The older Arina becomes, the stronger her seizures are. She experiences them not only in her sleep, but also while being awake. The child often falls and gets seriously injured. Parents are afraid for their child and do not leave her unattended at all times.

 When Arisha was four, she was prescribed with anti-seizure medication that worsened the health of the girl. She stopped eating, walking and sitting down again and became sluggish. The child was admitted to ICU with dehydration. Yet again she had to stay in hospital and undergo prolonged treatment. More than a year she was lying down with absent stare and clenched arms. The hormonal treatment was planned for 10 months. Tolerating the treatment was very hard for the girl: her body got swollen, and she gained three kilograms.

 The examinations continue. Genetic tests to determine the presence of genetic mutation — Rett's syndrome, organic acids, as well as full exomic sequencing were completed. The results were all negative. There are two opposing opinions concerning the surgery: one physician does not see any damage at all, the other says that the whole left hemisphere is fully damaged.

 Little Arina is suffering, but the reason of epilepsy is still unknown. Her parents started looking for clinics abroad. The Shen clinic in Germany specializes in epilepsy treatment. Alina’s documents were studied, the surgery is possible, but pre-surgical examination is required before the surgery to precisely identify the lesion. This examination is extremely expensive. The parents were told that the cost is 48 115 euro. “We can’t give up now, when the solution is so close. We hope that we will be able to complete examination and do the surgery that will help us get rid of the seizures” — Arina’s mother says.

 Arina needs help. Every day is valuable for the child. When Arina has seizures, she stops eating and drinking. Any next seizure can lead to the ICU. Arina has a chance to be healthy and live a happy life. We hope that medical examination will be possible soon! Everyone can offer a helping hand!