Tuesday, June 12, 2012

Dear friends, We address you for your help and support




Dear friends,

We address you for your help and support, our daughter Nina(4 years) was diagnosed half year ago with rare metabolic mitochondrial disease(Leigh sy.  Complex IV deficiency), and two months ago, Darin(1year) our son, was confirmed with the same genetic mutation.
Nina is born on 09.05.2008 and she developed normally until she was 1 year old, she started with kindergarden and than came the first infection with high fever and the first neurological symptoms(tremor on her hands and legs) which regressed after some time but never disappeared completely. Next infection that came with vomiting and dehydratation and the next with coughing made a lot of damage to her.Her little body could not stand alone because of constant tremor and trembling, she could not seat or hold her head alone, she could only lay in bed at that time. After this, recovering was very difficult but still, Nina handled her body instability, and she was smiling all the time.My husband found a job in Germany, and in that way we wanted to have possibility to do more for our children from health and financial point of view. Unfortunately, after two days trip, our arrival in Germany turned into hell.She started vomiting,she was very weak, her breathing became irregular, so we took her to the hospital the next day where we stayed 50 days in intensive care unit. Here we got this terrible diagnosis and after it was confirmed with genetic testing.
Nina was intubated and artificially ventilated all the time, 3 times they tried to extubate her but without success so we decided to make tracheostomy. During this hospital stay we had our travel insurance who refused to pay anything, and for this stay we have 50 000 euros hospital bill. After 50 days we were home only 3 weeks and than again vomiting and fever caused by withdrawal syndrome from Methadon( which she is still receiving due to addiction from intravenous opoids in hospital).This time we stayed one month in hospital and we had to make PEG-J tube surgery, so we can establish normal nutrition with special formulated milk formula.As a result of this hospital stays and surgical procedures, she can not move her hands and legs any more,she can not eat and drink,she can not seat and talk, only thing that she can do is to hear us and look us, fortunately, she understand us everything. As you can read, if some child has runnoing nose or sneasing, for us that that can mean life, this is a progressive neurodegenerative disease, which in basic is metabolic, the cell can not produce enough energy for everyday needs, especially during infections, when the body need more energy, so the cell is building waste substances that she can not get rid off easily, and the cell dies.You can read on our blog(http://ourlivesninaanddarinandourstory.blogspot.de/) how we are handling our disease and also we want to raise awareness for this rare, terrible, fatal disease! Unfortunately, no cure yet!
There is one experimental drug caled EPI-743, which is only in clinical trial, only 10 children in Italy and about 20 in the USA are receiving this medication.We are in contact with Dr.Guy Miller from Edison Pharmaceutical, who is responsible for clinical trials, and we got approval for EPI-743 to get in in Germany.
Now we must make conditions, technical and profesional,to receive EPI here, for us every traveling is very dangerous, which is why received approval at first place.We are exausted in any way, also my husband is changing his job in this moment and to start new one, he must wait sertain procedures which can last couple of months, at this point we have no insurance!
We address you,to help us in our struggles because we are fighting for our lives Nina and Darin and that is never ending battle!
If you like to contact us please do so tanja_milenko@yahoo.com and blasko_dimkovski@yahoo.com
+491627584728
Thank you for your time reading our story, every help is welcome



Acount number:                  210-5016563117.15
Name and surname:          Tanja Milenkovska Dimkovski

                                          IBAN: МК07210501656311715
                                          SWIFT: TUTNMK22

Adress:                              NLB Tutunska Banka AD Skopje
                                          Vodnjanska 1
                                          Macedonia


For Deutschland:
Deutsche Bank
BLZ 45070024
Account nummer 6345615
Blashko Dimkovski




ПОЧИТУВАНИ,
   Ви се обраќаме за Ваша подршка и помош, имено на нашата ќеркичка Нина (4години) пред половина година и дијагностицираа ретко метаболно митохондријално заболување (Leigh sy.  Complex IV deficiency), а од пред два месеци дознавме дека и нашето синче Дарин (1година) ја има истата генетска мутација за оваа болест. 
   Нина е родена на 9 мај 2008 година и се развиваше нормално до 1 година, кога почна да оди во градинка и кога дојде и првата  инфекција  со многу висока температура и првите невролoшки симптоми на треперење на рачињата и нозете, што се повлече после некое време, но не исчезна. Следната инфекција со повраќање и дехидратација и набрзо после тоа и нова инфекција со кашлица неа и направија голема штета. Нејзиното мало тело неможеше да се држи исправено затоа што постојано се тресеше, неможеше ни да седи ниту пак да ја држи главата исправено, единствено што можеше да прави е да лежи. После оваа ситуација опоравувањето одеше многу, многу потешко но сепак Нина се справуваше со телесните проблеми и секојпат беше насмеана. Сопругот најде работа во Германија, на тој начин сакавме да имаме можност да направиме нешто повеке за Нина, од здравствен аспект, но и од финансиски. За жал, пристигањето во Германија после пат кој таеше 2 дена, се претвори во пекол.  Нина почна да поврака, омалакса, дишењето и стана понерегуларно и веднаш следниот ден отидовме во болница и останавме 50 дена на интензивна нега. Тука, ја добивме првично оваа страшна дијагноза, за после неколку месеци  се потврди и со генетското испитување. Нина тука беше интубирана и ставена на вештачка вентилација од самиот почеток  и после 3 неуспешни екстубации и беше направена трахеостома. За време на престојот имавме патничко осигурување кое се огради од трошоците. За овој престој во болница имаме сметка од 50 000 евра. После тие 50 дена бевме дома дури три недели и повторно поради повракање отидовме во болница (овој пат повраќањето беше како резултат на апстиненцијален синдром од Метадонот што Нина сеуште го прима како замена за долготрајната употреба на опоиди  што ги примаше тие 50 дена на интезивна нега). Овој пат останавме еден месец и направивме операција за ПЕГ сонда, за исхрана со специјално формулирано млеко. Како резултат на целата оваа ситуација Нина не може да се движи воопшто, неможе да седи сама, неможе да ги движи рачињата или нозете, неможе да ја движи и да ја држи главата, неможе да зборува и да јаде, единствено што може е да не слуша и да не гледа и за среќа знаеме дека се разбира.  Како што можете да прочитате ако за некое детенце една инфекција значи носе што тече или кивање и кашлање, за нас мозе да значи живот, зошто ова е прогредирачка невродегенеративна  болест, чија основа е метаболна, клетката  неможе да создаде доволно енергија за секојдневните потреби( особено е тоа изразено за време на инфекции кога на организмот му треба многу повеќе енергија) , во клетката се натрупуваат  отпадни материи кои таа неможе да ги исфрли и со тек на време клетката угинува и така клетка по клетка...за оваа болест и за нас како се справуваме со оваа болест има повеќе на  блогот кој почнавме да го пишуваме(http://ourlivesninaanddarinandourstory.blogspot.de/) на кој можат да се прочитаат и повеќе информации се со цел да укажеме на ова навистина ретко, ужасно и фатално заболување. За жал сеуште без лек!
   Постои еден експериментален препарат , ЕПИ-743,  кој што сеуште не е во продажба, но е во фаза на испитување и го примаат само 10 деца во Италија  и окулу 20тина во Америка. Ние сме во контакт со г. др. Гај Милер директор на Едисон Фармацеутикал одговорен за тие студии  и добивме дозвола од него  да го примаме ЕПИ-743. Но сега треба да направиме услови, технички и кадровски за да го примаме тука, затоа што  за нас секое патување е  многу голем ризик. Исцрпени сме во секој поглед,  со оглед на тоа дека во моментов  сопругот е на преод  од едно на друго работно место и без осигурување, Ви се обраќаме Вам Почитувани, кој може, како може и колку може да ни помогне во битките, зошто ова е борба за нашите деца, за Нина и Дарин, а тоа е борба без крај.
Ви благодарам за одвоеното време да прочитате за нашата приказна, секоја добронамерна помош е добредојдена, а доколку сакате, можете да не контактирате на   tanja_milenko@yahoo.com ( Тања Миленковска Димковски) и blasko_dimkovski@yahoo.com ( Блашко Димковски +491627584728)


Broj na smetka : 210-5016563117.15
Ime I prezime: Tanja Milenkovska Dimkovski
Za donacii od stranstvo
IBAN: МК07210501656311715
SWIFT: TUTNMK22
NLB Tutunska Banka AD Skopje
Vodnjanska 1
Makedonija

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