For the Botan family, each day is a struggle for survival. Since the youngest son was diagnosed with Juvenile Myoclonic Epilepsy or Dravet Syndrome, their life turned into a countdown race. Each day is a small victory for the five-year-old Alexandru, whose drama started at the age of two months, when he had the first epileptic fit after having a high fever, says the portal E-sanatate, quoted by IPN.
Dravet Syndrome is a very rare and serious form of epilepsy that cannot be treated. Convulsions appear during the first age of life. These are very resistant to drugs and the prognostication for Dravet Syndrome is discouraging.
Today Alexandru follows treatment based on five preparations. The state provides free only one of these. “Alexandru has received this treatment that costs 240,000 lei a year since 2014. The cost includes only the drugs, not speaking about their transportation and banking expenses. In 2015, I started to send letters to the Ministry of Health, which directed me to the Ministry of Family and Social Protection so that this offered us the highest assistance possible. That assistance represented 3,000 lei in 2015. In 2016, with big headaches, we got back half of the sum spent on medicines. I didn’t know that I was to bring all the sales slips to the Ministry to be given back half of the sum. We were promised that this year we will be paid back the whole amount spent if I have all the sales slips to show that the preparations aware bought from abroad,” said the boy’s mother.
The woman said it is very hard to collect a large sum of money to buy drugs so as to have this sum repaid by the Ministry later. Until now she sought help through different campaigns on social networking sites and her friends and relatives helped her, but now she does not know where to go for help.
The family is preparing for the next visit to Rome. This is made once every half a year for monitoring the concentration of preparations in blood and this consultation costs about €300. Alexandru also needs Video Electro-Encephalographic monitoring each semester. This procedure is performed at a private medical center and more than 2,000 lei is needed for three hours. The severe disability pension is of only 680 lei and covers the costs for two cases of diapers.
The child does not follow a special diet, but needs to begin a ketogenic diet that is conducted at specialized clinics. In Germany, such a diet during two weeks costs €250. In six months the diet is changed. “As far as I know, this diet can improve the state of health of Alexandru. In some patients, the epileptic fits decrease in number by 90%. We do not have money to initiate such a diet,” said the woman, adding that if she gets the money promised by the Ministry on time, she can ensure Alexandru’s treatment until the middle of June.
In Moldova there are about 1,200 children with rare diseases.
