Wednesday, November 6, 2013

Rainers

14.03.2013.
Autor: Ilze Skuja
PHOTO DONATION: Jānis Saliņš

Rainers is now two and a half years old and he lives together with his mom and dad in Cesvaine. Joyful, friendly and nice - it is all aboutRainers. However, he is like this for indefinite time, because convulsive seizures, which torture the boy like an evil witch, can start any moment.

Till the age of 1.5, no one understood what was happening; no one could determine the diagnosis. The first year was spent in hospital. Here he learned everything - learned to roll, learned to crawl... Rainers’ mother is a doctor herself and she searched for answers everywhere - both at doctors and in the Internet. The diagnosis was determined only when Rainers was already two years old, and it was Dravet’s syndrome. Dravet’s syndrome is malignant myoclonic epilepsy. This syndrome is very rare.

Rainers has convulsive seizures from one to several times a month; these seizures are of different character, they are uncontrollable, unforeseeable and will not respond to treatment. In everyday life, convulsions - myoclonus, balance disorders, speech disorders. Thermoregulation disorders, high susceptibility to viruses, infectious diseases, which cause convulsive seizures. It is impossible to completely cure this disease, only to maintain boy’s health for him to be able to live with this diagnosis. Rainers has to take strong medicine, 3 medications each day. Two of them are paid for by the state, one medicine has to be bought independently. Medicine decreases the duration of the seizure. At first it used to last for half an hour, whereas now the duration of the seizure is one minute, which, of course, is highly crucial; yet, these medications do not fully eliminate seizures.

Rainers’ parents do everything to relieve the everyday life of the boy. The mother tells: “Rainers has serial daily convulsions, particularly after waking up. We carry him in our hands for an hour or so, because he cannot walk. He can do everything, he wants everything, but the brain is unable to switch between different modes. If there are a lot of things, he gets confused and starts to twitch, we are afraid of that it might result in a greater seizure. For example, the sun - when he comes out under the direct sun rays, I noticed that he feels worse, therefore, he has special sunglasses now. Different irritants, different stimuli can instantly cause seizure. Till the age of 2, such children develop just as other children, but then different disorders start to appear. Of course, every child is unique; only the God knows how we will do. Undeniably, medications have their effect as well, but we cannot do without them at all. Rainers has no balance, it is a part of this diagnosis; of course, compromised immune system; all viruses, which are encountered, are ours ... I am scared of everything; we had an incident when the seizure started on the street, and I ran home in order to give him medicine as soon as possible. Stress all the time, constant stress...”

Father: “We can approximately foresee the seizure for now. If it has not occurred for a week, we know that it has to happen soon. We even have the seizures, their frequency and duration marked in a calendar. After the consultation in Rome, we are cleverer, we know how to act, we do not call ambulance every time and we give medicine only if the temperature rises. In that case Rainers has to take several strong medications at once.”

Last September, thanks to the mother of a girl from Russia, who has similar diagnosis, Rainers’ parents found information about French professor, who is 78 years old and who discovered this diagnosis. Using their own forces and having collected necessary resources, they went to Rome in order to meet the professor. The professor provided consultations, performed examinations; however, it is necessary to repeat them.

The professor discovered that the children over 5 no longer have convulsive seizures at small temperature, daily myoclonus is smaller, and children withstand them easier. From the age of 5 to 25, seizures either disappear at all or repeat with small regularity, whereas, after the age of 25, big seizures may disappear; however, up till then the seizures are uncontrollable.

While Renate (Renāte) is talking to the mother, Rainers takes me to show his room, bed and toys. We wipe the floor together and talk about his favourite music channel - Hit Music Channel, which is turned on all the time Rainers is awake, because this music cheers him up.

All things in the house have round corners and are inaccessible for Rainers. Air temperature and humidity in the flat always has to be the same. It is all done in order for Rainers not to get injured or for any irritant not to cause seizure.

There are 4 children with such diagnosis in Latvia. Rainers’ mother is searching for their parents in order to be able to provide consultation and information, which she has obtained, as well as to find persons sharing her views.

Repeated examination in the A. Gemeli hospital of the CATHOLIC UNIVERSITY of the SACRED HEARTin Rome, Italy, in the Department of Infantile Neuropsychiatry at Prof. Eugenio Mercuri (lasting video-polygraphic analysis, encephalogram during sleep and wake, neuropsychiatric tests, neurovisual examinations, etc.) is highly necessary.

Constant logopedic and psychomotor rehabilitation (micro speech therapist, physiotherapist) is necessary.

In Italy, a translator, which would help to translate in hospital, is also necessary. If your place of residence is located in Italy, not far from Rome, and you can/want to help Rainers, the parents will be highly grateful for such support!

3,388 LVL are necessary in total.

Let’s help!

SUM STILL NEEDED: 1317,16  LVL (from 3,388.00 LVL; 30.12.13.*)
* We will regularly update the list of donators and the amount of help provided.
* In our next photo story we will definitely inform about the use of donations

MANY THANKS TO RAINERS’ ANGELS:
NADEŽDA PALAMARČUKA – LVL 1,- (03.04.13.)
ANDREJS JAČŅIKS – LVL 10,- (04.04.13.)
Anonīms ziedotājs – LVL 10,- (08.04.13.)
Anonīms ziedotājs – LVL 10,- (08.04.13.)
Anonīms ziedotājs – LVL 50,- (08.04.13.)
Anonīms ziedotājs – LVL 10,- (08.04.13.)
Irina La?inova – LVL 18,- (09.04.13.)
Anonīms ziedotājs – LVL 15,- (12.04.13.)
Anonīms ziedotājs – LVL 25,- (12.04.13.)
Ilze Zariņa – LVL 20,- (15.04.13.)
Irena Belska – LVL 10,- (15.04.13.)
Anonīms ziedotājs – LVL 5,- (15.04.13.)
Anonīms ziedotājs – LVL 50,- (16.04.13.)
Anonīms ziedotājs – LVL 20,- (16.04.13.)
Anonīms ziedotājs – LVL 6,- (19.04.13.)
Gertela Jelena – LVL 10.50 (EUR 15,-) (22.04.13.)
Anonīms ziedotājs – LVL 30,- (22.04.13.)
Anonīms ziedotājs – LVL 20,- (23.04.13.)
Janīna Labinska – LVL 10,- (29.04.13.)
Aigars Rozentāls – LVL 10,- (29.04.13.)
Anonīms ziedotājs – LVL 10,- (07.06.13.)
Lidija Reiniece – LVL 30,- (10.06.13.)
Anonīms ziedotājs – LVL 5,- (10.06.13.)
Anonīms ziedotājs – LVL 50,- (01.07.13.)
Anonīms ziedotājs – LVL 25,- (16.07.13.)
Anonīms ziedotājs – LVL 10,- (16.07.13.)
Anonīms ziedotājs – LVL 5,- (16.07.13.)
Kristīne Janka – LVL 5,- (16.07.13.)
Jolanta Soldatenoka – LVL 10,- (16.07.13.)
Anonīms ziedotājs – LVL 5,- (16.07.13.)
Rudīte Paure – LVL 50,- (17.07.13.)
Inese D?re – LVL 20,- (18.07.13.)
Anonīms ziedotājs – LVL 10,- (18.07.13.)
Anonīms ziedotājs – LVL 5,- (18.07.13.)
Anonīms ziedotājs – LVL 5,- (23.07.13.)
Sandra Stade – LVL 10,- (05.08.13.)
Aigars Rozentāls – LVL 10,- (14.08.13.)
Anonīms ziedotājs – LVL 5,- (16.08.13.)
Margarita Ruņģevica – LVL 10,- (19.08.13.)
Jeļena Hodarenoka – LVL 20,- (03.10.13.)
SIA K 4 MEDICAL – LVL 100,- (11.10.13.)
Inga Melngalve – LVL 20,- (14.10.13.)
Anonīms ziedotājs – LVL 10,- (16.10.13.)
Anonīms ziedotājs – LVL 30,- (29.10.13.)
Vladimirs Šults – LVL 30,- (04.11.13.)
Anonīms ziedotājs – LVL 170,- (28.12.13.)
Guntars Zeikmanis – LVL 10,- (30.12.13.)
Anonīms ziedotājs – EUR 20,- (20.02.2014)
Anonīms EUR 20,- (17.03.2014.)
Anonīms EUR 50,- (08.04.14.)
Anonīms EUR 10,- (08.04.14.)
Madžule Olga EUR 200,- (10.04.14.)
Anonīms EUR 10,- (11.04.14.)
Anonīms EUR 10,- (11.04.14.)
Labdarības fonds Smaids EUR 1000,- (15.04.14.)
Anonīms EUR 20,- (25.04.14.)
Anonīms EUR 25,- (25.04.14.)
Anonīms EUR 10,- (25.04.14.)
Anonīms EUR 10,- (28.04.14.)
SIA Alkor Būve EUR 200,- (06.05.14.)
SIA BMP-LV EUR 100,- (16.05.14.)
Anonīms EUR 30,- (19.05.14.)
Ilmārs Tabaks EUR 20,- (19.05.14.)
Anonīms EUR 210,00 (25.07.14.)
Agnese Treilone EUR 10,00 (28.08.14.)
Anonīms EUR 110,00 (25.09.14.)

11.07.14.
We have paid for the avio tickets for Rainers and 2 companions to teh clinics in Rome and back, 696,58 EUR.

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