US$158.00raised of $2,000.00 goal goal
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.
- Anita Lande
- Media Manager
Trip to the NATIONAL HOSPITAL for liver CHECKUpdate posted by Sig skeie at 08:36 pm
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. . . . .
Zarah Angelica is lying in bed a lot at moment.Update posted by Sig skeie at 10:06 pm
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. . . . .
Zarah got some Visitors...Update posted by Sig skeie at 06:20 pm
A little update:Even if the battle and struggles is hard there is some good days, with some small bright spots inbetween.Zarah Angelica has cracked some teeth in an seizure , and it is no wonder considering the forces that take place during a seizure . Will hope the new teeth. . . . .
it certainly does not endUpdate posted by Sig skeie at 12:41 am
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. . . . .
YOU MUST NEVER GIVE UPUpdate posted by Sig skeie at 01:50 am
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. . . . .
Zarah Angelica continues with some very bad daysUpdate posted by Sig skeie at 12:21 am
Zarah Angelica continues with some very bad days at the moment.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. . . . .
A freshly bathed Princess - And her Rock bottom mood.Update posted by Sig skeie at 01:00 am
A freshly bathed Princess! At moement Her Mood is at rock bottom, why? we do not know ..... Could it be chaos in her head, that is constant epileptic activity leading to this ? Or is it an infection going on, but a fresh bath with a good shampoo is. . . . .
Information from Zarahs MotherUpdate posted by Sig skeie at 12:27 am
I have to share this one written by Zarah Angelicas mother (Sorry if the translation is not 100% perfect):"We are a family of 6. Everyday, all focuses on Zarah Angelica's nursing needs and to raise money for a treatment that is the only one that works for our daughter. The. . . . .
Zarah sings OperaUpdate posted by Sig skeie at 12:09 am
There is days that is days of joy too.A little show and fun we need to create a Friday night But mute the sound, for this is not for the faint-hearted...... (This is what Zarah's mom says atleast)Opera singer Zarah sings and her mom is jammin, with as good as
Zarah Angelica got the great AKKA-Plate - Check the videoUpdate posted by Sig skeie at 03:19 pm
Zarah Angelica was granted "Akkaplaten" ... And here it became a really cozy interaction.Watch Zarah Test Drving the PlateAKKA-Plate is a drive plate that runs along a sling on the floor or freely using, for example, a joystick. Akka Smart gives users greater freedom and independence.Users who usually rely on. . . . .
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