MISHA'S JOURNEY: ABR SEPT 2011 assesment with leonid blyum

from the beginning

i am born at 8 months ,when i was 1 month i whas diagnoised with convulcions and my aortha was reduced at 6 weeks of age i was operated on my aortha and luckly my hart is good and i have had no further problems . my convulcions got much worse ,i have traveld a lot to find why i have convulcions ,my epilepcie till today has no caus in the hospital in mexico city they told me had syndroom of west ,so my aunt and unlce invited me to come to rome italie to see a specialist in the hospital in rome ,BAMBINO GESU i was there for 2 months in the hospital and was treated very well but by the end they still did not now what is wrong with me ,they gave me a lumbar puncher an MRI and genetic testing and nothing all looked normal except for my MRI they found i got an brain atrophy !!! that i did not have at 6 weeks of age. sinds it came on very fast that thaught i had a very fast progresing illness luckly it did not progress any further . I have had some more metabolic testing in VU medice center in amsterdam and all was normal then we went to WKZ in utrecht and there they did more metabolic testing and again noting, then we went again for genetic testing for RETT and angelmann and some more genes still now they have not found out WHY!!!!!!!!!
but my mother is not giving up we are doing lots of therapy and i get lots of love from my mom and love is what has keept me going!!!
now we are doing ABR and we are happy to say we are seeing some small changes yeaaaaa love it ,makes us work harder
we have to travel to belgium for a new training sesion and then we get to meet leonid blyum yeaaaaaa!!!!!!!!!!
we had a great experiance in belgium and lots of new inside
also in utrecht they did an other genetic test ,they cut away a piece of skin and they are doing tests
you see i have had many blood test and 2 blood tranfucions ,first one when i was 5 weeks of age then they said i have O+RH blood
then when i was 1 year and a half i had a bleeding i lost lots of blood from my mouth and nose ,we had to run to the hospital ,i was unconsions when i got there ,the whole emergancy got to an hold and ran to help me even docters from other part of the hospital came to my aide ,so i needed an second transfucion ,when they where giving me the transfucion my mother say it was type A+ RH blood
so my mother did 2 more test to see which type of blood i have and an other time O+RH and A+RH ,so the mistery continu's
next test that will be preformed is a gene map of misha ,father and mother to see if there is somthing to find or misha will stay a mistery

MISHA'S JOURNEY

Saturday, April 7, 2012

ABR SEPT 2011 assesment with leonid blyum

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