Sunday, June 3, 2012

GETTING EPI-743 HERE IN GERMANY!!!!

Hello,
WE ARE GETTING EPI-743 HERE IN GERMANY!!!!
I had a conversation with Dr.Miller Thursday evening, he said "how can i help you?" and i said right away "We need EPI!!!!"
Dr.Miller smiled so we talked about our situation and how we can receive EPI here.
It is only first step but it is a start so now we can focus on that.
We must find suitable physician and hospital here so that will have to contact Dr.Miller and arrange the next steps.
It will not be easy, we would have to go trough a lot of test like blood samples, urine samples, EKG, Echo, EEG and MRI brain Spectroscopy but we set our minds that we have to do everything that we can for Nina and Darin so we really hope it will worth all for them.

                                                           Sun is fun:-)


We are really thankful to Dr.Miller for having understanding for our situation, and the fact that we can not easily travel to Rome, so that makes Nina first patient treated in Germany and anywhere in Europe besides Rome,Italy.



                              First time in a Italian restaurant on the river Rhein

 We like also to express gratitude to Mrs.Gilmore who connected us directly with Dr.Miller, she said that they 've read our blog, and told us that we have beautiful children, and that she would do whats necessary if we need some advice and information in future,we are so happy, imagine that the people responsible for making medicine for mitochondrial disease have read our blog!!!!
Now we see that our blog have some meaning after all!!!


                          Different view from the bedroom, at the garden!!!!


Now we also have to do a lot of work here, first we must find some physician that will contact Dr.Miller from Edison Pharmaceutical and to start the process for getting EPI-743 here, second, we must have our insurance to cover all the expenses for the examination, i am still not working, i wait permission from the authorities to practice doctor's profession in Germany, because i have changed my specialization from internal medicine to neurology, i hope i can start real soon, and don't have to worry about that.
We finished with moving and we really enjoy our accessibility, you see on this picture i am actually thaking picture from our living room and i see Darin, Nina and Tanja, we actually move most of the stuff trough the window.



We have also a garage and cellar so we have plenty of space even doe the apartment is not so big, only 64 m2, for us is the whole world:-)







First time at the swinger!!!!





Thank you all for your prayers!!!!

6 comments:

  1. Dear Family!
    my child also, suffering from this terrible disease!
    Reached regarding purchasing something from the drug? and effectiveness of this EPI743? Please indicate for me. Sincerely, Ernest karba email address ekarba@yahoo.com From Hungary Europe 13.11.2012

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  2. Dear parents of Nina and Darin!
    My daughter is also suffering from the Leighs syndrome. Did you get Epi 743 yet? We are from Austria. Maybe you can answer me! Sprecht ihr auch deutsch?
    glg Barbara Fantitsch

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    Replies
    1. Hallo,
      ich habe gerade euren Kommentar gesehen, wir sprechen deutsch, wie geht's euch? wir bekommen EPI seit August 2012! Ich warte von euch zu hören!
      LG
      Tanja und Blashko

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  3. Hello from the US! I have found your blog and have enjoyed your pictures. Your family is beautiful. I also have a son with Leigh's Disease...he is 9. I will be praying for you and your family from the US.

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  4. Thanks Kim, we appreciate your support, how is your son doing? We also have fb page with the same name like the blog and we are a bit more active there if you want you can join us:) We are sending lot of hugs to you and your family :)

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