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.
-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.
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.