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 Hello, we are Dimkovski family and we have beautifull daughter Nina 5,5 years old and beautifull son Darin 2,5 years old, Nina has mitochondrial Leigh disease Complex 4 deficiency, tracheostoma, PEG GJ tube, oxigen sometimes and she can not move her legs and arms due to her disease and hospital stays and procedures that started last Oktober because of viral infection, our son Darin has the same mutation, and for one year he developed the first simptoms of the disease. After struggling the financial battle with the hospital and insurance companies and layers, we resolved our dept to the hospital, our condition is hopefully stable, Nina is receiving EPI-743 from the USA and we hope that Darin can be enrolled in some future study as well. We have seen a lot of other families struggle the same horrible disease and we hope that we can contribute with our experiences to somebody that shares the same pain

19 comments:

  1. Dear all,

    I would like to suggest to you to make an effort with the mobile phone companies (at least in Macedonia), to give you phone numbers for donations via SMS or a phone call. I know it may not be much, but I believe that you will raise your chances for gather financial support, since it is the easier way for people to make a donation.

    I sincerely hope your battle will be victorious, both for Nina and Darin.

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  2. Pleased to tell you, there are phone numbers for the donations
    T-MOBILE 070 143 106
    ONE 075 143 402

    Good luck for the little angels.

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  3. Донациските бројчиња се:
    VIP 077 143 775
    T-MOBILE 070 143 106
    ONE 075 143 402

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  4. There is a baby in Hungary who is dying and need this treatment as soon as possible. Who should they contact? Could you help us? The family is very desperate.. If you read my message, please answer to me as quickly as you can. Thank you very much. Contact address:
    neszti83@gmail.com

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    Replies
    1. Hi,
      what is the baby's diagnose,is it leigh disease?how old is she,can you explain more about the situation?we were contacting Edison pharmaceutical especially dr.Guy Miller,you can try e mail him if it is mitochondrial disease,there are links on their official web site http://www.edisonpharma.com/Home.aspx they are also conducting studies with EPI-743 in Rome Italy,please tell us more and we can tell you our experience,hope that the baby is going to get better,
      we wish the parents lot of strength

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  5. Hello,
    in my family there is a child with the leigh disease diagnosed. The condition of the child is getting worse. Could I get in touch with you via e-mail or even better via phone in order to find out as much as possible about the possible treatment? I´d appreciate your response greatly. My address: marzec94@yahoo.com

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  6. As a father of six children,3 of them who have Leigh syndrome, I hope epi-743 totally cures your children. May you have continued strength, positivness and hope.
    I was wodering if your children were taking other vitiamins before starting treatment with epi-743, and if they take them still?

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    Replies
    1. Sorry for delayed answer, i just saw your message,after epi protocol we add vit b1 and vit b6, and creatin, you can also consider idebenone(best option), alfa lipoic acid, methionine, resveratrol and some others, of course every child is different and should be treated differently, please write back!

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  7. Dear Nina and Darin,

    My name is Rob and I work as a community manager with the European Organization for Rare Diseases: http://www.eurordis.org

    Thanks for sharing your family's story on this very nice blog.

    We've recently worked with some patient groups to develop an international community for Leigh syndrome on RareConnect.org:

    https://www.rareconnect.org/en/community/leigh-syndrome

    Please register there and share your story there so it can be translated across the other languages of this international community. Would we be able to add a link to your blog?

    Thanks very much for your time. Hope to talk to you soon.

    Best wishes,

    Rob
    robert.pleticha@eurordis.org

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  8. We love your blog. Our four-month old son Lukas has just been diagnosed with Leigh Syndrome and your blog has given us real hope in what is a terrible time for us. We live in Germany as well and I was just wondering what hospital here you can recomend or have a had a positive experience with? Anything will help. My email address is:
    luki.kane@gmail.com

    all the best,
    Adam Kane

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  9. Hello,

    My 1 year and 4 months old daughter is diagnosed with a Leigh like syndrome called MEGDEL. Your'e blog really gives us hope because my daughter is very ill. We live in the Netherlands and i want to introduce this knowledge to my metabolic doctor so we can fight to get this EPI 743.

    If you have any tips on how to start this journey please help.

    Kind Regards,
    Regis

    email: regis.denouden@gmail.com

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  10. Hello, Clélia have a girl with almost 6 years old that has Leigh Syndrome. We live in Portugal. I heard about the EPI-743 but i was told that only children from USA could be enrolled in to the treatment. Although in you blod you said that you babygirl is doing in Germany. How she is doing? Its possible other Chils from Europe be enrolled in the experimental treatment?
    Many Thanks
    Kind Regards

    email: cleliamartins07@gmail.com

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  11. Hello.
    My son of 22 months has just been diagnosed with Leighs syndrome. we live in Denmark, Copenhagen and the doctors have said there is nothing they can do for him other than the usual vitamiun b1 and b2.

    he has been on a respirator for nearly 3 weeks. they have attempted to take him off two times but he is struggling to breath on his own or swallow. i have read some if not all of your blogs. the EPI 743 has given us a hope. however i am having great problems trying to get in touch with people or find a hospital/physician ready to take on EPI 743.

    PLEASE PLEASE! can you help us

    Email add: aisharaja@hotmail.com

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  12. Hello,
    I am the mother of two boys aged 30 months both with Leigh syndrome (they have the pyruvate deficit.).
    I wonder how long Ninna is taken EPI 743, in what amount?, there have been improvements?

    Our doctor in Portugal is willing to follow the boys in taking EPI 743 what procedures you had to get it?


    Best regards

    Sandra Nobre

    E-mail add; sandra.cordeiro.nobre@gmail.com

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  13. Hello,

    My name is Amanda. I am a student at UGA with mitochondrial disease; I was diagnosed in 2010. I know personally how tough the struggle for diagnosis is and how treating the symptoms this disorder causes is another battle entirely.

    One of the most important parts about my diagnosis was realizing I wasn't alone in the struggle with this rare and mysterious disease. I've been working for the Foundation for Mitochondrial Medicine since May of 2013. Their website is http://mitochondrialdiseases.org/. They provide a lot of information about treatments and research about mitochondrial disorders that you may find interesting.

    Please, feel free to contact me anytime at anc19@live.com. I would also be happy to help you if you would like any advice about dealing with this disorder; I have had practice since 2008.

    Thank you for your time,
    Amanda

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  14. Thank you for sharing
    My son has Leigh complex 4, French Canadian type. He doesn't move his limbs too.
    How is the epi-743?
    We were reading up and contemplating abt going over to the states for the trial research. But there were many factors to consider too.

    Sorry for the many questions, may I ask is a VFS was done prior to the feeding recommendations?
    My son feeds orally but very very slowly n inefficiently. I am very concern abt the nutritional levels and silent aspirations.

    Would appreciate abt advise
    Thank you for sharing (samanthatang18@yahoo.com.sg)

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  15. Hello! My name is Viktoria. I'm from Ukraine. Sorry for my English , I translate using googl. My daughter is 1.9 years-old.
    Her medical report is LEIGH SYNDROME (MILS)SUBACUTE NECROTISING ENCEPHALOMYOPATHY.
    I did not know much about this disease need a help please so that we can treat her in a manner that ensures her safety and healing. I hope some can provide us with an advice please need to see a consultatant that can helps us to improve her health condition and her medical status in thus she heal and recover from this suffering and pain. Can you please help. Please we are looking so desperately to sort her condition and we are hoping that you can find us a solution and lighting our way.
    Can I am learn more about EPI 743 tests for children with the syndrome Leigh?
    How the drug affects the health of the child with syndrome Leigh?
    Whether this drug cures of illness or need to be taken continuously to maintain a child's life ? Whether children are gaining research now?Please help

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  17. Hello, tell please a little about reception EPI 743? Whether it is necessary to accept it constantly for the child's life? My e-mail- kristeff@mail.ru

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