MISHA'S JOURNEY
my journey till now
Pages
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
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
Saturday, May 12, 2012
little angel
we have done for the first 3 years fisical reabilitacion and really did not see many changes .
at one month she was able to hold her little head up and hold her bottle ,then she started anti epileptic mediceins and she only slept til she whas 8 months old!!!
i have taken her off almost al the anti epileptic meds and she is doing so much better
the neurologist does not like my disicion
after that misha never gained head control, arm movements ,sitting she never even got to the first milestones
.
we did the glen domann book and misha showed more reactions but her body whas not strong ,her body whas colapsed ,then we started to do ABR(adanved biomecanical reabititacion) and to my opinion rater fast i shaw changes coming ,misha never had a neck her head kind of rested on her sholders and in 2 months i saw changes coming ,now over a year of doing ABR we see changes and for a little girl like misha they are a lot ,all the docters we have seen either told us she could never do any thing just kind of keep her healty and move her a bit .
we are very happy to have started ABR and have her on g-therapy,now we see changes they said misha would never make !!
i never gave up on her i always said no she will she will
and i still say she will ,it is just a lot of work and many hours ,she is an angel and worth all the work ,i will never give up !!!some days are very hard one gets tired and some times i feel sick but misha comes first so we go on
i want to see misha sit by her self and hold up her head
then we go and visit all the people who said no she never will ,we are working to that and we will do it
she is my angel and she works very hard in getting better and being the best she can be
at one month she was able to hold her little head up and hold her bottle ,then she started anti epileptic mediceins and she only slept til she whas 8 months old!!!
i have taken her off almost al the anti epileptic meds and she is doing so much better
the neurologist does not like my disicion
after that misha never gained head control, arm movements ,sitting she never even got to the first milestones
.
we did the glen domann book and misha showed more reactions but her body whas not strong ,her body whas colapsed ,then we started to do ABR(adanved biomecanical reabititacion) and to my opinion rater fast i shaw changes coming ,misha never had a neck her head kind of rested on her sholders and in 2 months i saw changes coming ,now over a year of doing ABR we see changes and for a little girl like misha they are a lot ,all the docters we have seen either told us she could never do any thing just kind of keep her healty and move her a bit .
we are very happy to have started ABR and have her on g-therapy,now we see changes they said misha would never make !!
i never gave up on her i always said no she will she will
and i still say she will ,it is just a lot of work and many hours ,she is an angel and worth all the work ,i will never give up !!!some days are very hard one gets tired and some times i feel sick but misha comes first so we go on
i want to see misha sit by her self and hold up her head
then we go and visit all the people who said no she never will ,we are working to that and we will do it
she is my angel and she works very hard in getting better and being the best she can be
Friday, May 11, 2012
35 degrees of heat
we have been out of it ,trying to keep cool it is 35 degrees and feels like 41 ,you do not need to move to sweath ,even with a fan on it is still to hot ,also the heat has got us on a rollercoaster ride with colds ,most poeple will go how!! a cold comes with cold weather but no here you get it when it is to hot and the fan spinning directly on you
do hope for rain soon ,then it will cool of some.
misha does not like the heath ,she loves it to go in her little pool and just lay there she get really relaxed and full of smiles.
so doing our ABR hours with this heat has been hard.
but progres is coming we see misha getting stronger bit by bit :)
do hope for rain soon ,then it will cool of some.
misha does not like the heath ,she loves it to go in her little pool and just lay there she get really relaxed and full of smiles.
so doing our ABR hours with this heat has been hard.
but progres is coming we see misha getting stronger bit by bit :)
Wednesday, May 2, 2012
FAMILY
family ,what suld you expect from you family ????
that is a question that has been on my mind for a long time
one feels they suld be there for you in the hard times and one hopes for there suport and help special for a special needs child
one as a mom to a special needs child you give your live for your angel ,not thinking 2 X abouth it.
it is very hard when the famlily of your special needs child do not feel the same way abouth your special needs child or do not show it ,do they come by for love or is it more a must ,do they hide the fact that there is a special needs child in there famliy???
I have many questions ??????
all I now is I take care of my little angel ,I love her she is special and any one who does not see that is blind ,misha is a most special child she is an angel walking this earth and she deserves respect .
it makes me sometimes very sad ,and very happy to see lots of the other little angels with there familys ,and how they are happy proud and spend time with with there special needs child ,how they try to be part of there special lives and do there best to make there live the best it can be.
I do hope one day misha her family will see how special she is and want to be part of her live .
me as your mommy misha I love you you are my everything I miss you when i do not see you for 5 minutes ,I love you my little angel !!
that is a question that has been on my mind for a long time
one feels they suld be there for you in the hard times and one hopes for there suport and help special for a special needs child
one as a mom to a special needs child you give your live for your angel ,not thinking 2 X abouth it.
it is very hard when the famlily of your special needs child do not feel the same way abouth your special needs child or do not show it ,do they come by for love or is it more a must ,do they hide the fact that there is a special needs child in there famliy???
I have many questions ??????
all I now is I take care of my little angel ,I love her she is special and any one who does not see that is blind ,misha is a most special child she is an angel walking this earth and she deserves respect .
it makes me sometimes very sad ,and very happy to see lots of the other little angels with there familys ,and how they are happy proud and spend time with with there special needs child ,how they try to be part of there special lives and do there best to make there live the best it can be.
I do hope one day misha her family will see how special she is and want to be part of her live .
me as your mommy misha I love you you are my everything I miss you when i do not see you for 5 minutes ,I love you my little angel !!
Tuesday, April 17, 2012
new cures on the way for nuerological diseases
today a facebook friend posted this webpage sounds very interesting
here the original webpage in italian and the translation is underneed
http://osservatoriomalattierare.it/sindrome-di-rett/1984-sindrome-di-rett-una-tossina-di-escherichia-coli-come-possibile-cura-
Published today in PLoS ONE study conducted by researchers at ISS that sheds light on the mechanism underlying the effects of CnF1 on the brain and opens new scenarios in the fight against rare diseases
They open new scenarios in the fight with Rett syndrome, severe neurodevelopmental disease for which there is still no cure. It is in fact yesterday's publication in the journal PLoS ONE study, conducted by researchers from the Departments of Medicine and Cell Biology and Neuroscience Institute of Health, which highlighted one of the mechanisms underlying the activity of a toxin produced by bacterium Escherichia coli (the CnF1) on the plasticity of the nervous system.
"The results were encouraging - ISS said the President, Professor Henry Garaci - they open up the possibility of a therapeutic application of the toxin CnF1 in Rett syndrome but also in other rare diseases with cognitive and motor deficits. More recent studies have led to the first in vivo demonstration of the role of this drug and thus have a greater translational relevance. "
In the study published today in PLoS ONE shows how the treatment with the CnF1 of astrocytes (glial cells has always been considered as "handmaids" of neurons but whose role in brain function is gradually revaluing) is able to promote the in vitro growth ofneurons cultured on their side and synapse formation (synaptogenesis).
The action at the level of the astrocytic CnF1 constitutes an important feature of this protein molecule, for making it a valuable tool in the development of targeted therapies not only for the Rett syndrome but also for all those characterized by abnormal astrocyte.As with other substances produced by microbial species (consider, for example, the botulinum neurotoxin, which ranges from cosmetics applied to the muscle pathology and treatment of diseases algiche), the toxin of Escherichia coli confirms that the action at the cellular level natural products such as toxins of bacterial origin can have very important implications in the medical field.
"The continuation of the research - said Dr Carla Fiorentini, coordinator of the multidisciplinary group that studies the ISS CnF1 - includes the study of the effects of this toxin in other animal models, both of neurodegenerative disorders such as Alzheimer's, both of alterations neurodevelopment, are associated with intellectual disability and / or motor. Crucial and final goal of our studies is obviously the start of the trial in humans.The latter necessitates the synthesis of CnF1 according to Good Manufacturing Practice and carrying out the various procedures necessary for the request for authorization of a phase I study of the product by accredited laboratories. "
The study confirms the key role of the toxin, which emerged in a paper published a few weeks ago on Neuropsychopharmacology: in this case the ISS researchers have shown that in transgenic mice, a model for Rett syndrome, the toxin is able to fight the changes in layer of astrocytes as well as cognitive problems and motor coordination deficits typical of the disease.
here the original webpage in italian and the translation is underneed
http://osservatoriomalattierare.it/sindrome-di-rett/1984-sindrome-di-rett-una-tossina-di-escherichia-coli-come-possibile-cura-
Published today in PLoS ONE study conducted by researchers at ISS that sheds light on the mechanism underlying the effects of CnF1 on the brain and opens new scenarios in the fight against rare diseases
They open new scenarios in the fight with Rett syndrome, severe neurodevelopmental disease for which there is still no cure. It is in fact yesterday's publication in the journal PLoS ONE study, conducted by researchers from the Departments of Medicine and Cell Biology and Neuroscience Institute of Health, which highlighted one of the mechanisms underlying the activity of a toxin produced by bacterium Escherichia coli (the CnF1) on the plasticity of the nervous system.
"The results were encouraging - ISS said the President, Professor Henry Garaci - they open up the possibility of a therapeutic application of the toxin CnF1 in Rett syndrome but also in other rare diseases with cognitive and motor deficits. More recent studies have led to the first in vivo demonstration of the role of this drug and thus have a greater translational relevance. "
In the study published today in PLoS ONE shows how the treatment with the CnF1 of astrocytes (glial cells has always been considered as "handmaids" of neurons but whose role in brain function is gradually revaluing) is able to promote the in vitro growth ofneurons cultured on their side and synapse formation (synaptogenesis).
The action at the level of the astrocytic CnF1 constitutes an important feature of this protein molecule, for making it a valuable tool in the development of targeted therapies not only for the Rett syndrome but also for all those characterized by abnormal astrocyte.As with other substances produced by microbial species (consider, for example, the botulinum neurotoxin, which ranges from cosmetics applied to the muscle pathology and treatment of diseases algiche), the toxin of Escherichia coli confirms that the action at the cellular level natural products such as toxins of bacterial origin can have very important implications in the medical field.
"The continuation of the research - said Dr Carla Fiorentini, coordinator of the multidisciplinary group that studies the ISS CnF1 - includes the study of the effects of this toxin in other animal models, both of neurodegenerative disorders such as Alzheimer's, both of alterations neurodevelopment, are associated with intellectual disability and / or motor. Crucial and final goal of our studies is obviously the start of the trial in humans.The latter necessitates the synthesis of CnF1 according to Good Manufacturing Practice and carrying out the various procedures necessary for the request for authorization of a phase I study of the product by accredited laboratories. "
The study confirms the key role of the toxin, which emerged in a paper published a few weeks ago on Neuropsychopharmacology: in this case the ISS researchers have shown that in transgenic mice, a model for Rett syndrome, the toxin is able to fight the changes in layer of astrocytes as well as cognitive problems and motor coordination deficits typical of the disease.
Sunday, April 8, 2012
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