Pain relief treathment for Zarah
Donation protected
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
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
Organizer
Sig Skeie
Organizer
