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.
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.

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.
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.

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
Then the day had arrived, the day Zarah Angelica should take the PEG Surgery (Percutaneous Endoscopic Gastrostomy), at Haukaland Hospital, Bergen, Norway.
All was set up to do the surgery, they took little Zarah Angelica to the surgery, and was doing the anesthetic. Finaly said the time has arrived, after this long time waiting for the PEG surgery.
The feeling that the surgery should be done, so the family finaly could go home and know that Zarah Angelica now should get the nutrition she needs, was a hugh relief for them all.
Then the Gastroenterologist (Doctor) came out to the family. Berglijot (Mother) was kinda relifed, as now she was thinking; Finaly its over.
The Gastroenterologist shook his head, and told them that the surgery didnt go well... Ofcause this was a shock, as Zarahs mom, got scared, do to those words.
Then he explainded, and the reason why they had to stop the surgery, as he said it: "We couldn't do it because Zarah Angelica's anatomy didn't allow it."
It was not any good news at all, this surgery PEG, should help Zarah to get the nutritions she needed , and her medicins via the PEG. So what will happen now? I can only imagen the feelins, the toughts
the family, special mom and dad of Zarah must have had. After waiting since November 2018, finaly was here, and then it couldnt be done.
The Gastroenterologist then started to explain more and told that not all hope was gone yet.
He started explain, why there was problems with this surgery. And here is some of the reasons why this couldnt be done now:
Inside Zarah Angelica things are different from "Normal". Both the stomach and colon is locaded different inside her body.
This has to do with the Kasai surgerys thats been done with Zarah, back when she was a little baby. A lot has to be done back then. This was the main reason why they couldnt do this surgery now,
as there wouldnt be any spay for the PEG inside, it would have been pushing on her Ribs.
There is a soultion for this, thats good, in all this that is happening. The Soultion is, that its going to be a even bigger surgery, more doctors, more planning.
They have to "move around" on her organs, so bigger surgery, bigger operation, to make space for the PEG.
This is the lates from Zarahs Battle. There will be more meetings, planning etc to see what to do, and when this surgery can be done. Sadly more pressure on Zarah, and the family. And even more battles after the
Surgery, do to more pains.
I will come back with more info about this, and other things in Zarah and her familys life soon.
Thanks a lot for reading this, thanks to all who will share it, and to all who will help with any donations.
Bless you all.
Sig
All was set up to do the surgery, they took little Zarah Angelica to the surgery, and was doing the anesthetic. Finaly said the time has arrived, after this long time waiting for the PEG surgery.
The feeling that the surgery should be done, so the family finaly could go home and know that Zarah Angelica now should get the nutrition she needs, was a hugh relief for them all.
Then the Gastroenterologist (Doctor) came out to the family. Berglijot (Mother) was kinda relifed, as now she was thinking; Finaly its over.
The Gastroenterologist shook his head, and told them that the surgery didnt go well... Ofcause this was a shock, as Zarahs mom, got scared, do to those words.
Then he explainded, and the reason why they had to stop the surgery, as he said it: "We couldn't do it because Zarah Angelica's anatomy didn't allow it."
It was not any good news at all, this surgery PEG, should help Zarah to get the nutritions she needed , and her medicins via the PEG. So what will happen now? I can only imagen the feelins, the toughts
the family, special mom and dad of Zarah must have had. After waiting since November 2018, finaly was here, and then it couldnt be done.
The Gastroenterologist then started to explain more and told that not all hope was gone yet.
He started explain, why there was problems with this surgery. And here is some of the reasons why this couldnt be done now:
Inside Zarah Angelica things are different from "Normal". Both the stomach and colon is locaded different inside her body.
This has to do with the Kasai surgerys thats been done with Zarah, back when she was a little baby. A lot has to be done back then. This was the main reason why they couldnt do this surgery now,
as there wouldnt be any spay for the PEG inside, it would have been pushing on her Ribs.
There is a soultion for this, thats good, in all this that is happening. The Soultion is, that its going to be a even bigger surgery, more doctors, more planning.
They have to "move around" on her organs, so bigger surgery, bigger operation, to make space for the PEG.
This is the lates from Zarahs Battle. There will be more meetings, planning etc to see what to do, and when this surgery can be done. Sadly more pressure on Zarah, and the family. And even more battles after the
Surgery, do to more pains.
I will come back with more info about this, and other things in Zarah and her familys life soon.
Thanks a lot for reading this, thanks to all who will share it, and to all who will help with any donations.
Bless you all.
Sig


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