Pain relief treathment for Zarah
Aicardi syndrom - Westsyndrom - Biliary Atresia.
Zarah Angelica is a little girl that has been born with the Aicardi syndrome . And allso been diagnostic with many other illness.
(Info: This is in Norwegian Currency, It had to be, do to the Rules of fundrising - Its simple to figure out what your Donate, just use a valuta calculator, or use the link we added down at bottom of this page. The Valuta between USD - NOK is around $5 USD = NOK40.69 so its simple to understand. Or use a Quick calculator, and you will figure it out, no doubt.)
-Aicardi syndrome is a rare genetic malformation syndrome characterized by the partial or complete absence of a key structure in the brain called the corpus callosum, the presence of retinal abnormalities, and seizures in the form of infantile spasms. Aicardi syndrome is theorized to be caused by a defect on the X chromosome as it has thus far only been observed in girls or in boys with Klinefelter syndrome.
-West syndrome (infantile spasms)
- Corpus Callosum Agenesi
-Biliary atresia, a condition in newborns in which the common bile duct between the liver and the small intestine is blocked or absent
The family has been in and out of hospital since Zarah was born.
There has been done a lot of treathments ;
Fenemal, Prednisolon, Keppra, Sabrilex, Topiramat og ACTH-injections.
The Family has already been told that Zarah Angelica probably would not survive the first or the second decade, and that the development will probably stop at any time. For infantile spasms, mortality is within the 3 first years of life 61%.
And now they try do anything to slow down a negative trend. And this is what they need help with.
The cost of the Medicins here in Norway, for this treatment is about $1500 -$2000.
And that is for one month only, the Goverment wont support with anything.
(That is still a fight thats ongoing September 2018)
This is an ongoing fight for them, day and night... all around the year. A little help from each of you out there will make a BIG different
Thanks a lot for taking the time and read this.
And thanks a lof for any donation You can affore now, or maybe later.
As This Fundrising had to be in NOK Not $ US, you can use a calculator to check the currency here : Calculate into your Currency Right Click link to open new Window. (or use any Calculator of your choice ofcause!)
Yours friendly
Sig
Abroad Fund Leader for the Non-Profit Organisation:
Team Zarah Angelica Fund Rising.
-TEAM ZARAH ANGELICA is a Legal Fundraiser Organisation
ORG. 921375409 - NORWAY
+ Read More
Zarah Angelica is a little girl that has been born with the Aicardi syndrome . And allso been diagnostic with many other illness.
(Info: This is in Norwegian Currency, It had to be, do to the Rules of fundrising - Its simple to figure out what your Donate, just use a valuta calculator, or use the link we added down at bottom of this page. The Valuta between USD - NOK is around $5 USD = NOK40.69 so its simple to understand. Or use a Quick calculator, and you will figure it out, no doubt.)
-Aicardi syndrome is a rare genetic malformation syndrome characterized by the partial or complete absence of a key structure in the brain called the corpus callosum, the presence of retinal abnormalities, and seizures in the form of infantile spasms. Aicardi syndrome is theorized to be caused by a defect on the X chromosome as it has thus far only been observed in girls or in boys with Klinefelter syndrome.
-West syndrome (infantile spasms)
- Corpus Callosum Agenesi
-Biliary atresia, a condition in newborns in which the common bile duct between the liver and the small intestine is blocked or absent
The family has been in and out of hospital since Zarah was born.
There has been done a lot of treathments ;
Fenemal, Prednisolon, Keppra, Sabrilex, Topiramat og ACTH-injections.
The Family has already been told that Zarah Angelica probably would not survive the first or the second decade, and that the development will probably stop at any time. For infantile spasms, mortality is within the 3 first years of life 61%.
And now they try do anything to slow down a negative trend. And this is what they need help with.
The cost of the Medicins here in Norway, for this treatment is about $1500 -$2000.
And that is for one month only, the Goverment wont support with anything.
(That is still a fight thats ongoing September 2018)
This is an ongoing fight for them, day and night... all around the year. A little help from each of you out there will make a BIG different
Thanks a lot for taking the time and read this.
And thanks a lof for any donation You can affore now, or maybe later.
As This Fundrising had to be in NOK Not $ US, you can use a calculator to check the currency here : Calculate into your Currency Right Click link to open new Window. (or use any Calculator of your choice ofcause!)
Yours friendly
Sig
Abroad Fund Leader for the Non-Profit Organisation:
Team Zarah Angelica Fund Rising.
-TEAM ZARAH ANGELICA is a Legal Fundraiser Organisation
ORG. 921375409 - NORWAY
Latest update about Zarah:
Everything she is now going through, it certainly does not end.
After taking all the tests at Haukaland Hospital, Bergen, they Finaly could go home again.
At home they recive messages from Hospital.
Read below this is what Zarahs mom is telling us:
New diagnoses and issues now that the Family thought everything was ok.
However, it turned out to be many new findings on MRI this time.
We received the epicrises the day after we got home, they are really effective at Haukeland.
But to get the message that the condition was worse than we thought, became overwhelming.
I often feel that I can lose you little princess and can not see me in a life without you.
Especially in the bad times that have been now.
And you've dropped 5 kilos and lost so much of the skills you mastered before.
I look back at the videos I've shared before, where we show your development and improvement with the CBD.
And then I miss your smile, your eagerness to splash in the bath, your eagerness to play and the feeling that you're up to it.
The message we received was that Zarah Angelica has 4 intracranial cysts of importance, and probably more small ones.
Some have increased in size.
Fortunately, one had become smaller.
But the one who was not there last year was 3.5 cm in the scallops now.
And this one was a "Dandy Walker" variant, this was something I and Carl Fredrik (my Husbond) already start read about when Zarah Angelica was in the stomach.
It was scary I remember. Because when they discovered missing Corpus Callosum, we feared the diagnosis, because the pressure in the brain could suddenly be too big.
Then it is right back on the operation table to consider entering Shunt to control the pressure in the brain.
The picture below shows the ventricles enlarged at Zarah Angelica.
Additionally, she has many brain malformations, which are more due to lack of brain bridges.
She has grown a lot too, maybe much has changed with her growth, I do not know....?
We were told early that Aicardi syndrome is a very gloomy diagnosis to get,
but now there is so much to keep track of.
Aicardi Syndrome, Biliary Atresia, West Syndrome / Epilepsy, Lacuner, Migration Disorders, Corpus Callosum Agenesi and now the Dandy Walker variant on top of everything .... and its know that none of those can be cured.
You can treat sequelae or side effects along the way. We now decided to use some Benzodiazepines together with Haukeland Hospital.
Zarah Angelica is not sleeping very well, or not sleep at all true the nights due to many nightly attacks, and the hope is that Benzodiazepines can help her in the worst periods - it wont fix anything, but hopefully make her true the worse periods.
The CBD-Oil goes too fast out of the system, so at night it may be good with something that works over time, so it can hopefully help her in her worse periods at night.
It will be wonderfull if it can help her, but we have been very afraid of such treatments, do to what i can do to the Liver.
We will keep it as long as possible. As she need something, do to all the attacks to her brain.
And if she damages her brain, we do not know what the consequences are.
Then we allso need watch how the liver takes this. Worse scene now is Zarah Angelica has to liver transplant because of it,.
It may be worth it because of the consequences of several brain injuries now is worse than a liver transplant.
Fortunately, she has a CBD, ridiculous part is;
The CBD treatment that Helps her does not get covered by the Goverment
(And this CBD is very expecive to get to the country) That she is just a KID, doesnt matter for the people in the Goverment at all, it seems like.
If we just could atleast have this covered, so we didnt have to fight agains the Goverment on top of all we are going true, and little Zarah has to go true.
Every year we have to apply again to try get it covered, and every year its the same. Not a Dollar from the Goverment of Norway.
Everything to help Zarah, to help her true the pain, to help her, yes Survive, we have to cover with our own pockets.
Thanks to many good people we atleast get some help, to cover some of the costs for this... Its wonderfull, but it feels so wrong that it has to be done like that, to save a kids life.
Bless you all.
Bergljot Larsen (Zarahs Mom)
We will come with more updates when we know more about the Battle little Zarah Angelica is going true.
Really hope some more of you out there can help with a few dollars, and hopefull share our Gofundme page.
Please follow to get the updates first.
Thanks a lot to all of you who are helping and planning to help
Friendly
Sig
(Sorry if there is a few typos, but hopefully you all understand, if something you wonder about, just contact me -Sig)
Everything she is now going through, it certainly does not end.
After taking all the tests at Haukaland Hospital, Bergen, they Finaly could go home again.
At home they recive messages from Hospital.
Read below this is what Zarahs mom is telling us:
New diagnoses and issues now that the Family thought everything was ok.
However, it turned out to be many new findings on MRI this time.
We received the epicrises the day after we got home, they are really effective at Haukeland.
But to get the message that the condition was worse than we thought, became overwhelming.
I often feel that I can lose you little princess and can not see me in a life without you.
Especially in the bad times that have been now.
And you've dropped 5 kilos and lost so much of the skills you mastered before.
I look back at the videos I've shared before, where we show your development and improvement with the CBD.
And then I miss your smile, your eagerness to splash in the bath, your eagerness to play and the feeling that you're up to it.
The message we received was that Zarah Angelica has 4 intracranial cysts of importance, and probably more small ones.
Some have increased in size.
Fortunately, one had become smaller.
But the one who was not there last year was 3.5 cm in the scallops now.
And this one was a "Dandy Walker" variant, this was something I and Carl Fredrik (my Husbond) already start read about when Zarah Angelica was in the stomach.
It was scary I remember. Because when they discovered missing Corpus Callosum, we feared the diagnosis, because the pressure in the brain could suddenly be too big.
Then it is right back on the operation table to consider entering Shunt to control the pressure in the brain.
The picture below shows the ventricles enlarged at Zarah Angelica.
Additionally, she has many brain malformations, which are more due to lack of brain bridges.
She has grown a lot too, maybe much has changed with her growth, I do not know....?
We were told early that Aicardi syndrome is a very gloomy diagnosis to get,
but now there is so much to keep track of.
Aicardi Syndrome, Biliary Atresia, West Syndrome / Epilepsy, Lacuner, Migration Disorders, Corpus Callosum Agenesi and now the Dandy Walker variant on top of everything .... and its know that none of those can be cured.
You can treat sequelae or side effects along the way. We now decided to use some Benzodiazepines together with Haukeland Hospital.
Zarah Angelica is not sleeping very well, or not sleep at all true the nights due to many nightly attacks, and the hope is that Benzodiazepines can help her in the worst periods - it wont fix anything, but hopefully make her true the worse periods.
The CBD-Oil goes too fast out of the system, so at night it may be good with something that works over time, so it can hopefully help her in her worse periods at night.
It will be wonderfull if it can help her, but we have been very afraid of such treatments, do to what i can do to the Liver.
We will keep it as long as possible. As she need something, do to all the attacks to her brain.
And if she damages her brain, we do not know what the consequences are.
Then we allso need watch how the liver takes this. Worse scene now is Zarah Angelica has to liver transplant because of it,.
It may be worth it because of the consequences of several brain injuries now is worse than a liver transplant.
Fortunately, she has a CBD, ridiculous part is;
The CBD treatment that Helps her does not get covered by the Goverment
(And this CBD is very expecive to get to the country) That she is just a KID, doesnt matter for the people in the Goverment at all, it seems like.
If we just could atleast have this covered, so we didnt have to fight agains the Goverment on top of all we are going true, and little Zarah has to go true.
Every year we have to apply again to try get it covered, and every year its the same. Not a Dollar from the Goverment of Norway.
Everything to help Zarah, to help her true the pain, to help her, yes Survive, we have to cover with our own pockets.
Thanks to many good people we atleast get some help, to cover some of the costs for this... Its wonderfull, but it feels so wrong that it has to be done like that, to save a kids life.
Bless you all.
Bergljot Larsen (Zarahs Mom)
We will come with more updates when we know more about the Battle little Zarah Angelica is going true.
Really hope some more of you out there can help with a few dollars, and hopefull share our Gofundme page.
Please follow to get the updates first.
Thanks a lot to all of you who are helping and planning to help
Friendly
Sig
(Sorry if there is a few typos, but hopefully you all understand, if something you wonder about, just contact me -Sig)
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