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Pain relief treathment for Zarah

kr4,785 of kr10,000 goal

Raised by 11 people in 1 month
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.

33063470_1537271960219984_r.jpeg

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
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)
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Today I have a little update from Zarah Angelicas mother. They are now finaly at the Haukaland Hospital, Bergen. That they been waiting a long time to get to. FINALY they are there!


So I just want to put down what she wrote (sorry if some words not 100% correct translated by me).

So lets started, this is from Zarahs mother:

"Lovely little friend, it's 6 o'clock ... you are there in your deep sleep without any clue what's going to happen.

Soon you will go to anesthesia and into a deep-sleep, to take MRI of the brain & backrest. At the same time, there will be some tests with a retcam on the eyes and allso many blood samples will be taken.

It's really great to be able to do this much in one and the same time. Not least, it is incredibly delicious to be here at Haukeland Hospital, Bergen. A short drive, instead of waiting at the airport, taxi and all that we have to go true to get to the SSE and Rikshospitalet, OSLO.

It Feels safe and delightful to avoid exposing Zarah Angelica to all the risk of infection that are at airports and in airplanes.

When we arrived there, we got a little "lost" in this Big hospital, but we after 20-30min figure out where we had to go. That was a nice little "gym-time" for us.

Now I am sitting here in the cafe, waiting for a phone from radiological... What will they tell us? Will they find something that will keep us to stay here longer? Or will they tell us we can travel home again today.


We have so many times experienced being at the hospital for tests, and ending with several weeks of stay there...

Fortunately, they gave her something to sleep on before they started, so Zarah didnt have to go true the pain of veneflon and blood tests, that has given her so much trauma before.

So it was lovely to see that she was so calm, sleeping and kinda relaxed. That felt good for us.

When she wakes up after all the tests, we are sitting here ready to give her all the LOVE in the world. And then a little later we will have an appointment with a neurologist, to talk about the test results. "

- Bergljot Larsen (Zarah's mom)

When there is more news and results of the test etc, from Zarah Angelica and her Family how this is going I will post it in an update, so all you who like to know about this, will get the latest update.


If you could support our GoFundMe for Zarah Angelica by making a donation and then sharing it with your network, I would greatly appreciate it. I know that money can be tight, so please know that even $5 helps us get closer to our goal!

As I said before; Many small streams make one big river. So every cent, every dollar counts.

Thanks a lot for reading this update, allso a hugh thanks to all who has helped so fare, with sharing and donations of the Fundraising to help Zarah Angelica and the family in this situation. I hope You will keep following the story
and life of Zarah and her Family.


I and Team Zarah Angelica Fund Rising, greatly appreciate your kindness to our non-profite Organisation.

Best wishes for you are yours,
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
Hi

To put it honestly, the family has been a bit burned out. Zarah's mother has not been tempted to write, nor has she had the time or effort because things have been very exhausting with such a sick child who blows everyone for excess energy throughout the family. For those of you that understand, or knows anything about the Aicardi Syndrome, can understand what theyr going true... if you dont know a clue about it.

Be happy your kids never got it. Or never will get it.

Allso I like to mention Zarah is member of the Aicardi Syndrome Foundation in USA. Just for info.

Now they are back in the blog community again, it's weird ... Several days without writing posts..Zarah's mom likes to write, but the way they have to do it on gets so strange. It gets so much trouble to write about, and much is about a system we are located in that does not work as it should. She would probably never have started blogging if they do not need all the support it provides in this desperate situation. .

Their only rescue has been to expose them completely to all of Norway through the media and now the whole world. Media has been their rescue so far. THEY LOVE MEDIA! They had never come any way without being open and honest about this. You can not sit in silence if things do not work in this country, you must spread and ask for help. And YOU MUST NEVER GIVE UP!

Zarah Angelica continues to be unstable due to the disease, but now she has been so bad that it has been creepy. She is so incredibly tired, unable to keep her head upright.

So here is some of what Zarahs mom has been telling about the situtation at the moment:


"Zarah`s mom said Now I've had infinite many hours in her chair, holding her to give her what she needs most-love and safety .

But suddenly in the night we heard laughing and babbling in the baby call. We all ran into her, Zaras` father Carl Fredrik
filmed and we smiled in happiness WHAT a bunch of happy people we are when things go well I have to laugh. Every little sign of change in her positive direction is so GREAT LOVE here in the house, one forgets everything else and happiness breaks in every cell in the body.


It is incredible how much her form of day affects the atmosphere in this house. One is basically locked 24/7 with her, but everything is so different when she's so weak.

Then you will have extra peace in the house, and you wonder what the result will be.

We check saturation, wonder if she needs oxygen or if she will manage to get through this time too.

We must pay attention and take care of Leander too, so he does not end up being depleted by the whole thing. On Monday there was a planning day at the preschool so everyone was free. then he had to visit his cousin, who is at the same age as Leander.

And it was so nice.Leander had the time of his life, so he would not go home again lol Good for him to get out of the house, not just to be among us all the time. So I understand he would not come home

Then it was time for Zarah Angelica to sleep, when she fell asleep I went to the US side: Gofound Me and looked for Zarah Angelica's fundraising.
I was really shocked, because her side was nominated to get paid 4000 in Norwegian Kroner by the GoFoundme Team.



Every day and night, our local hero is working from Åkrehamn, Norway So amazingly done by him that he sits 24/7 every day and night all the weeks to help our dear Zarah Angelica ❤
It's amazing that the United States The most trusted free online fundraising platform should support our girl.

Think if an organization or Other here like the government of Norway if they were so
generous in helping sick children .... you and your wify (Sig & Anita) are admirable and we thank you from the bottom of our heart. WE LOVE YOU!"

Well here you had a little update about Zarah Angelica and her familys daily life, and battles. We hope YOU out there will be a part of making theyr life better for Zarah Angelica.

Thanks for Any help and Donations, that you can manage to do. No Donations are to small, every $ will help a lot.

Hope you all will follow our trip with Zarah, please follow this page and you will get more inforamtion what is happening around Zarah and her family's life and battles.



Thanks you all for your time,

Yours friendly

Sig & Anita
+ Read More
Zarah Angelica often has some really bad days....

It is really tiring for her, she can not hold her body uprised.

She and the Body falling together and she gets very exhausted in the body. Much epileptic activity hurts a lot! But we all live in the hope that it will be a little better atleast soon.

And on top of this they Called from the Haukaland Hospital, where the Family was ready to leave for with Zarah for more tests right after the weekend. They got told that the meical tests, and the time to be there has been postponed for an other three weeks.

This was a real big dissepintment for them all, as they allready have had 2 of those postponed before, so this was the 3rd time. Just imagen...if must been very hard.

So hopefully the Hospital now, do as they should be done very long ago.

The Family really wonder the state of Zarah's brain.

There are also many other interventions that are planned for Zarah in anesthesia. So now I really hope they get this trip to the Hospital. I believe it is enough for the family now, with this seriously ill little princess.

One positive message the Family got atleast, a letter from the National Hospital - so in November there will be liver status control.

For now this is the last information I have about Zarah.

Can you help us out because your donation directly can helps fix this?

Thanks a lot that You care, and want to be a part of helping Zarah and her Family!

(if you tweet about Zarah at Twitter, please use hashtag zarahangelica in your posts)



Yours friendly

Sig
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kr4,785 of kr10,000 goal

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