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Pain relief treathment for Zarah

kr10,141 of kr15,000 goal

Raised by 18 people in 2 months
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.

10 Nov. 2018 Our first Goal is of 10,000 NOK  has been reached - We will contact some of you to Send a ZarahAngelica Supporter T-Shirt Soon.

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
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It's been a while since we've written about Zarah Angelica.
Whats going on in her life, and with the rest of her family.

Since last time Zarah has been going in and out of the hospital, with more tests, bloodsamples etc...


This is something that has to be done, even if it many times can be a tough experience for this little princess. It allso
is tough for the family, special to see this little girl and all she have to go true.

Imagen going in and out of the hospital, 4-5 times a month, with a little girl. And remember they allso have more kids. Its amazing how they manage
to focus on any of the others, special the small ones, when there is so much happening around Zarah.


But they have handle it, and its really impressive how they manage to do this, and fit in the other kids.


The latest news is that Zarah Angelica will soon go to Haukeland Hospital, Bergen, for a surgery.
At the Hospital they will put in a PEG Stands for;

Percutaneous Endoscopic Gastrostomy


A surgical procedure for placing a feeding tube without having to perform an open laparotomy (operation on the abdomen).
The aim of PEG is to feed those who cannot swallow. PEG may be done by a surgeon, otolaryngologist (ENT specialist) or gastroenterologist (GI specialist).
It is done in a. hospital or outpatient surgical facility.
Local anesthesia (usually lidocaine or another spray) is used to anesthetize the throat.
An endoscope (a flexible, lighted instrument) is passed through the mouth, throat and esophagus to the stomach.
The surgeon then makes a small incision (cut) in the skin of the abdomen and pushes an intravenous cannula (an IV tube) through the skin into the stomach and sutures (ties) it in place.


Hopefully this will do help Zarah Angelica, and atleast make something a little more easy for her, and help get her in a little better shape.


I will update you more about Zarah Angelica as soon as we have more information from her parents. Its a busy time of year even for them..yes folks its closing into Christmas for all of us who celebrate it.


If some of you would be willing to help this little girl and the family. If and when you can, its warm welcome.

Make a difference today, and show others the way.
Any sharing and donations, to our nonprofit fundraising for Zarah Angelica we are happy to get.



I wish you all a blessed and wonderfull christmas time.

Remember to take care of those around you, we have no guarantee for anything in this life.


Thanks for reading this update.

Yours friendly

Sig

Make-a-difference this Christmas
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Here is a little update about the tests Zarah Angelica went true at the Hospital in Oslo. (Norway).


As most of you know they first took this Ultra Sound of Zarahs liver. When they was ongoing with this, Zarah got a seizure, she needed emergency medicine.

The test results of the liver was surprisingly well, it looked nice and good.

This is allmost 100% "normal" on kids that has done the surgery for Kasia Biliary atresia.

(More information about Biliary Atresia: Liverfoundation https://liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/biliary-atresia/ )

Allso the tests of the spleen was looking normal.

Thanks God for some positive news atleast.



After those tests was done, they had to go take bloodsamples, 16 samples they took from little Zarah.
For people with liver illness, a lot of tests has to be done. As we all know the liver is very importan for our bodies.


The sampling went not to bad, she was still calm after she got the emergency medicine earlier.
But something happend when the nurse took her in the arm; she kinda open her eyes wide-open, and did try to protest.


Must be do to, she done this many times, and even as young as she is, she not forgot it. As if she know what was going to happen.

After all the tests, she slowly woke up, but she was not in any good shape at all. As told before, it is often very hard for her to eat her food.

So she was not in any good shape at all.

The little girl was really exhausted, do to a long day, a lot of tests, and not any food.


The Liver specialist (doctor) was a little worried for Zarah, since she have drastically lose weight.

He wanted to take some more tests and X-Ray of her troth (pharynx) do to Zarah as big issues to swollow the food. This is not allways, but mostly on days she gets bigger seizures.

Do to the sickness, seizures and difficulty swallowing, she gets less nutrition than she burns in the course of a day. Some of those Sizures, can keep on going for 15 minutes.


So its more like a workout, but yes you understand, not in a good way. She use a lot of energy when she got those sizures,
and as said; she burns a lot more energy then she manage restore.


Its allso been talked about to do a operation, and put in a Peg - Percutaneous endoscopic gastrostomy.

(Info about this via Wikipedia: https://en.wikipedia.org/wiki/Percutaneous_endoscopic_gastrostomy )


So they want Zarah back at hospital again soon. In Haugesund, our local Hospital. This so the Doctors can get a better overlook of Zarahs situation right now.

More will come about Zarah and her Family. Thanks for reading this update, and thanks for any Donations and sharings.


Sig
November 2018
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Trip to the NATIONAL HOSPITAL for liver CHECK


Right now Zarah and her Family is at the National Hospital in Oslo (capital of Norway) There she going for a main check of her Liver.

It all started with taking the plain from Karmoy, to Oslo. A Flight about 50-60 minutes.
This is the first trip when Zarah Angelica didn't get to sit on lap to one of the Parents, do to the age.
And was a hugh challenge, because all the way true the flight, they had to hold her head upright.
They had to do this, since Zarah no longer can do it herself, it just falls straight forward or to the side.

She had to sit upright, and on top of it all, there was no support for her head on the sides of the seat. So it was really a hard trip for her, and at the end of the flight she coulndt nearly take it anymore, its was really
a tough flight for this little princess.

Its allways hard to see your little ones, special when you see they struggle, and start cry. And its special hard for this family, and even extra hard on this flight, since they did see that Zarah did try to tell something,
and it isnt allways easy to understand what she say or wants.

Finaly they did arrive Oslo. Where they had to stop by the hospital pharmacies to obtain food products. Zarah is in a bad shape, and she will not eat. Or can not eat.

Thank God for the food drinks and yoghurts.
Her brother Leander was with them on the trip, and he enjoy it. Its good for him I guess to come with for the trip, and allso to be there with his little sister.

The Lady working at the Pharmacy admired his care for his little sister.

When this was done the family went to the Hotel they going to stay at, when theyr in Oslo, for those liver tests, that Zarah needs to do.
At the reception, when they was checking in Zarah got one really big seizures, and they had to get her to the room as fast as possible. As told she is in a bad shape now, and the trip, and everything ofcause
makes things even worse. Poor little girl.

At the evening Zarah Angelica was totally out of energy, and very tirsthy. On top of it all she is extra thirsty due to the common cold she has rolling in her body.

And again the same situation, where Zarah try explain herself, and it hasnt been easy for them to understand, and ofcause they wish they could make her see they understand her better.

It must be a terribly bad feeling for them, when Zarah needs a lot of confirmations that they see her.

Zarah had not a good evening and night, so they had to stay there with her, to keep her feel safe, and try comfort her as good as possible.

Well now we all are crossing our fingers for her day at the Hospital. It will be a long day, and hopefully it will bring atleast some positive out of it.

Thanks for reading this update, and thanks for any support from you out there. Its really needed.

New update will come when I know more about how the day at hospital went.

-Sig
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Zarah Angelica is lying in bed a lot at moment.

She is very extinguished.

At moment Zarah Angelica have allmost none physical therapy, and or any other training.

Why?

Because the family in discussion with the Specialists and Doctors ,from the Hospital, recommand that Zarah needs resting, a lot of resting.

So at moment she shall not do any special traning etc, as they said at Hospital, Zarah is totally worn out and need a lot of rest. So for now all will focus on let her have a lot of peace and rest.


No stress & just a little training. Because so much has happen over the last months, what she really needs now is a little Break from all of it, they said at the Hospital.

Zarah's new condition means the parents needs to try give the other kids more attention, they get allready some, but for the parentes it feels like they have to little time with them, do to Zarahs situation.
And with this new situation, they are barely out, because Zarah can be very easy sick from the cold outside.


So that's why it's even more important to focus on special the youngest boy, Leander (Brother of Zarah) and ofcause the other Kids.

This weekend Zarah had a lot of seizure so it was not a lot of rest for her or the parents. So at moment Zarah is in a down period again.

Some good news is that the parents has got a local for free, where they "building" up a "store" where they can have Doantion sales - Flea Market, to get some money in to covered her treatments.


The Employment office (NAV), Tax office and social office of the Norwegian Goverment, say there is a law agains this too... as in you cant have to many Flea Markets or Donation sales in a year, an other strang law, an other stupid law over here.



But I ask what is to many, where does the limit go? And why this limit is there, to stop people helping a sick child, Zarah or any others.

As Zarahs mom say: "Is a weekend of the month too much, should you not be allowed to sell the donated gifts given, for Zarah Angelica to be treated? This is really unclear..."


Anyway at moment Berlijot, Zarahs mom, waiting for an answare from the Norwegian Goverment, Tax office, what and how to do it...so they dont get in any trouble, when they try help theyr own kid.

They planning to sell some jam, waffles etc...


Allso they have a lot of Gifts/Donations from people around, that they want to sell, to get more money for the very expcive treatments and medications to little Zarah Angelica.

I have added some pictures with Zarah, her brother Leander, and from the Store. There is a lot of stuff they got from great people out there. Its wonderfull to see, that people care, as the Goverment want help much, not with Zarah or any other kids.

Not for now, hopefully the battle one day will make the Goverment change theyr stupid, yes theyr stupid laws, and help those small needing beautyfull childern.


Thanks for taking your time reading this Article/News update from Zarah and her Family.

Hopefully you will share it for more to see it. And allways we welcome any donations from you out there.

-Sig
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kr10,141 of kr15,000 goal

Raised by 18 people in 2 months
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