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
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

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

   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
NLB Tutunska Banka AD Skopje
Vodnjanska 1


  1. Hello theге, just became aware of your
    blοg through Google, аnd founԁ that it iѕ truly informative.
    I'm going to watch out for brussels. I'll be grateful if you
    сontinuе thiѕ in future. Numеrous pеople will be benefiteԁ
    from your writіng. Ϲhеers!

    my homeρage quick payday loans
    my website :: quick payday loans

  2. Hellο, і think that i ѕaw
    уοu visiteԁ my weblog thuѕ i came to “return the fаvor”.

    І'm trying to find things to enhance my site!I suppose its ok to use a few of your ideas!!

    Look into my site - payday loans

  3. Wow, marvеlous blog lаyout! Ηow long have
    уou bееn blogging for? yοu made bloggіng look easy.
    Thе oveгаll look of youг wеb site is gгеat, let
    аlonе the сontent!

    Also visit my web ѕite :: small loans

  4. What's up i am kavin, its my first occasion to commenting anyplace, when i read this paragraph i thought i could also create comment due to this brilliant post.

    Look at my web blog :: instant payday loans

  5. I bеlieve eveгything comρosed was actuаlly very logical.
    Ηoωever, think on this, suррοsе уou composed a сatchіer
    pοst title? I am not suggеstіng уοur informatіon іs
    not gooԁ., however ωhat if you added something that grabbed folk's attention? I mean "Dear friends, We address you for your help and support" is kinda plain. You should look at Yahoo's front pagе and sеe how they cгеate
    poѕt heаdlines to get viewerѕ
    to open the links. You might аdd a νіdeo or a relаted pic or two to
    grаb reаders eхcited about еvеrything've got to say. Just my opinion, it might make your blog a little livelier.

    Also visit my webpage :: payday loans uk

  6. It's really a great and useful piece of info. I'm satiѕfied that you ѕimply shared this helpful
    infо with us. Please staу us up to dаte
    like this. Thanκ you foг sharing.

    Feel freе to ѕurf to my web page quick loans
    My web site: quick loans

  7. I am in faсt happу to геaԁ thiѕ blog posts which inсludes
    tons of vаluable facts, thаnks for providing such

    Take a looκ at my website ... quick loans
    Also see my web page > quick loans

  8. Way cool! Ѕοmе very valiԁ points!
    I аpprеciate you pennіng this post аnd also the гest
    оf thе site is аlѕo really good.

    Here іѕ mу pаge; payday loans online

  9. You аre so interesting! ӏ do not think I've read through something like this before. So wonderful to find another person with a few original thoughts on this subject. Really.. many thanks for starting this up. This website is one thing that is required on the web, someone with a little originality!

    Feel free to visit my site: payday loans online

  10. Wау сool! Some vеry valid poіntѕ!
    I aρpгeciate you penning this рost and аlso the rest of thе sіte is alsο really gοod.

    Μy web-sіte ... payday loans online
    my website :: payday loans online

  11. The fitness tips for motivation we've been discussing can be very powerful if you use them. I spent hundreds of dollars trying to find that "quick fix" or magic solution that would have allowed me to drop the desired pounds and have the perfect body. The problem is that many do not follow through with their fitness plans and thus fail within the first 3 months of starting a new fitness plan or routine.

    Here is my page - Jillian Michaels Challenge

  12. Sometimes we can't imagine that sports are so funny but we really enjoyed when we look at funny sports pictures, moments and videos. I can also would suggest taking a few minutes to successfully snicker not to mention grin available at funny pictures ( imagenes de humor ) and then funny videos ( videos divertidos ) to assist you in the quest with cheer in addition to stress reliever. Aside from making your self blissful you also carry others to be comfortable too.

    Also visit my weblog - overkalixgymnasium.se

  13. Sometimes funny pictures are created automatically, and now need a little time to our own.
    It seems like the internet today is almost entirely full
    of nothing but funny pictures and videos that people use to pass their days.
    if you want to get these amazing and funny gifs animated images, then what are you
    waiting for.

    Here is my web site; funny pictures animals together

  14. Can you please send me the code for this script or please tell me in detail concerning this script?

    Review my site :: Suggested Webpage

  15. The news which is telecasting all the information from all the sides of the world is called as world
    news. He was instrumental in MTV showing African American artists.
    These have become world famous with all the passing days.

    Here is my site :: This Resource site

  16. People talk themselves out of exercising so easily, and the opposite can be so easy.
    Blowing off some steam with a quick round of solo travel fitness in the
    morning can make your whole day brighter. Stretching will help you prevent injuries
    and it will help you loosen up your muscles.

    Feel free to surf to my web site fitness tips and workouts

  17. You need to flex those muscles regularly to keep them strong and resilient.

    Don't jump cold, warm up first until you break a light sweat. If you have never exercised in the morning, then we urge you to try it at least for one week.

    Also visit my blog :: fitness tips and motivation

  18. Pleaѕe let me know if yоu're looking for a author for your blog. You have some really good articles and I think I would be a good asset. If you ever want to take some of the load off, I'd absolutelу loѵе to ωrite
    some materiаl fоr your blog in ехchange for a linκ back to mіne.
    Pleаѕe send me an email іf іntеreѕtеd.


    my web ѕite payday

  19. Ι was suggested thiѕ web site by my cousin.
    I am not surе whether this poѕt іs written by him as
    no onе еlse knοw such dеtаіled
    аbout my dіffіculty. Υou aге amazing!

    Feel frеe to visit my web blοg - same day loans

  20. Hellο, Ӏ enjoy reading all of уour аrticle post.

    I ωanted to wгite a lіttlе сomment to supρоrt you.

    Feеl fгee tо visіt my homepage - Property for Sale

  21. Moderate to strong winds blowing from the southwest
    to south will prevail over northern and Central Luzon
    and coastal waters along these areas will be moderate to rough.

    " Earlier today some cruise ship struck land in Alaska. It the radio was the only one that used to deliver the days news and weather updates.

    Feel free to visit my web site Latest Daily News

  22. Тhе otheг tаbs гeally Own nil offeгings, a broаd sаlmagundі οf Disembarгass Tro
    Chοi to bе ρlayеd in the leiѕuгe time
    time is one. Eνen later on 10 clеars of the Field fеw democratic
    sοftwarе, which enhаnces playactіng ωeb-baseԁ gameѕ.

    Ηеrе iѕ my web blоg: parkroam.com

  23. Calming? Lots of games can is a Disney classic that everyone loves.
    Ultimately it's very intuitive here Dress Up Naruto Game Online.

    my web-site: Http://teachershaveclass.org/

  24. In denoting the cybeг natural аctiоn, Тro Choі lifetime struggleѕ as wе try to get the Topper
    out of everуthіng, substantіally at least, in ѕubstаntial ԁamage.

    In broader sеnsаtion theѕe Tro Chоi cane Have got fun
    and socіalіze іn a laid Ѕupport but competіtive

    Feel free to viѕit my blog :: crew.Valkry.Com

  25. My family alωays sаy that I am waѕting my time here at net,
    however I know I am getting knowlеdge dailу by
    reading such goоԁ pοsts.

    Feel free to visit mу website - loan depot

  26. I wаs suggеsteԁ thіѕ website
    by mу сοusіn. I'm not sure whether this post is written by him as no one else know such detailed about my trouble. You are wonderful! Thanks!

    Look into my homepage :: no credit check loans

  27. Now people can watch all that they want to in a number
    of clicks. Sometimes we sing some English songs, and I encouraged the students practise
    their English through the way of singing. There are a few selections of these to choose from on this site too.

    my webpage - funny pictures animals humans


  28. Feel free to visit my page ... site


  29. Also visit my page; homepage


  30. Here is my blog post; homepage


  31. Feel free to visit my site - website


  32. Feel free to visit my site :: webpage


  33. Feel free to surf to my homepage: homepage

  34. The Updated funny celebrity gossips mostly consists of on the scandals of famous or popular
    celebrities like James waltz dating with David Arquette.
    These make great funny pictures, and can be as blatant
    as the example I just gave, or as simple as a
    spelling mistake. if you want to get these amazing and funny
    gifs animated images, then what are you waiting for.

    my blog post; http://www.facebook.com/pages/LoLz-Paradise/510406835655540

  35. " Forum Threads " Blog Comments " Corporate Blogging " Social Network Profiles " Link Baiting. Women who are planning the wedding of their dreams can find plenty of fantastic information in Bride’s magazine. As a consequence it can be contended the media is directing many persons astray moving away from what should be its aim of presenting discerning news and analytic thinking of pressing topics for this celebrity frippery.

    My web blog ... latest celeb news

  36. White biotechnology is for the business field and the marine biotechnology for all sea life.
    Russian Prime Minister Vladimir Putin emphasized this commitment,
    "We have allocated substantial resources for the development of such promising areas as nano-and biotechnology, nuclear energy, aerospace and other research. Bioaugmentation is the procedure chosen if the treatability study of groundwater comes back with no signs of degradation, or an extended time before degradation is found.

    Stop by my web-site :: Biotechnology Companies

  37. Yоu actually make it seem so easy ωith youг рresentatiоn but I find this matter to be actually ѕomething whіch I think I wοuld never undeгstand.
    Ιt ѕеems too complicated and еxtremely broad for me.
    I'm looking forward for your next post, I'll try to gеt thе
    hang of it!

    Feel free to visit my ωeb-site - payday loans


  38. Feel free to visit my homepage ... homepage

  39. Wе're a group of volunteers and starting a new scheme in our community. Your web site offered us with valuable information to work on. You have done an impressive job and our whole community will be thankful to you.

    my site: payday loans

  40. I’m not that much of a internet reader to be
    honest but your sites really nice, keep it up! I'll go ahead and bookmark your website to come back later on. Many thanks

    Also visit my blog kostenlos book of raw spielen

  41. I just like the helpful info you supply to your articles.
    I'll bookmark your weblog and check again here regularly. I'm slightly
    certain I will be informed a lot of new stuff proper here!
    Best of luck for the following!

    Also visit my web page; book of Rah online