Pain relief treathment for Zarah

Update posted by Sig skeie On Nov 09, 2018

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.

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

-Sig

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Update posted by Sig skeie On Nov 01, 2018

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.

Leander, Zarahs Brother


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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Update posted by Sig skeie On Oct 24, 2018

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 that come at school start will do better.
Otherwise, the family should continue the good job they do with Zarahs Oral Hygiene.
They where a little skeptical about whether they did a good job with her teeth, Zarah had so much discoloration on her teeth.
But luckily, this had nothing to do with bad
toothbrushing.
This could be something that happens do to the medication or for other reasons we can not do anything about.
First they thought it might come from CBD use, but that the Dentist said it was not from this.

Its Very impressive to see that something works in all the fights thats are ongoing.
A Big thanks must go to: Kopervik Dental Clinic that was so amazing to take the trip to Zarah and her Familys Home.


They came home to them, and did the hygienic procedures, quick and comfortable.
It is such a great relief to be helped this way.
That the Family are offered this. That the Clinic can come to home visits. This save special Zarah Angelica from alot of stress, and she doenst need this extra stress now, in her situation.
The Family are so are incredibly humble and grateful for the wonderful help that the Kopervik Dental Clinic is doing. It shows atleast that some parts of the system still works a little.


After they was done with Zarah, they allso took a check on all the other family members, this is impressive too.

When it was all over, Zarah got a little gift from the Dentists, because she been so incredibly good and patient.
Whats she got? A little ball to play with.

Thanks for reading this little update about Zarah, and hopefully you will share it, and allso maybe donate a few bucks, to help them continue theyr battle for Zarahs life and pain relife treathment.

Have a wonderfull day all.

-Sig


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Update posted by Sig skeie On Oct 17, 2018

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 the Family thought everything was ok.
However, it turned out to be many new findings on MRI this time.

We received the epicrises the day after we got home, they are really effective at Haukeland.
But to get the message that the condition was worse than we thought, became overwhelming.

I often feel that I can lose you little princess and can not see me in a life without you.
Especially in the bad times that have been now.
And you've dropped 5 kilos and lost so much of the skills you mastered before.
I look back at the videos I've shared before, where we show your development and improvement with the CBD.

And then I miss your smile, your eagerness to splash in the bath, your eagerness to play and the feeling that you're up to it.

The message we received was that Zarah Angelica has 4 intracranial cysts of importance, and probably more small ones.

Some have increased in size. Fortunately, one had become smaller.

But the one who was not there last year was 3.5 cm in the scallops now.

And this one was a "Dandy Walker" variant, this was something I and Carl Fredrik (my Husbond) already start read about when Zarah Angelica was in the stomach.

It was scary I remember. Because when they discovered missing Corpus Callosum, we feared the diagnosis, because the pressure in the brain could suddenly be too big.
Then it is right back on the operation table to consider entering Shunt to control the pressure in the brain.


The picture below shows the ventricles enlarged at Zarah Angelica.
Additionally, she has many brain malformations, which are more due to lack of brain bridges.
She has grown a lot too, maybe much has changed with her growth, I do not know....?


We were told early that Aicardi syndrome is a very gloomy diagnosis to get,
but now there is so much to keep track of.

Aicardi Syndrome, Biliary Atresia, West Syndrome / Epilepsy, Lacuner, Migration Disorders, Corpus Callosum Agenesi and now the Dandy Walker variant on top of everything .... and its know that none of those can be cured.

You can treat sequelae or side effects along the way. We now decided to use some Benzodiazepines together with Haukeland Hospital.

Zarah Angelica is not sleeping very well, or not sleep at all true the nights due to many nightly attacks, and the hope is that Benzodiazepines can help her in the worst periods - it wont fix anything, but hopefully make her true the worse periods.


The CBD-Oil goes too fast out of the system, so at night it may be good with something that works over time, so it can hopefully help her in her worse periods at night.

It will be wonderfull if it can help her, but we have been very afraid of such treatments, do to what i can do to the Liver.
We will keep it as long as possible. As she need something, do to all the attacks to her brain.

And if she damages her brain, we do not know what the consequences are.
Then we allso need watch how the liver takes this. Worse scene now is Zarah Angelica has to liver transplant because of it,.
It may be worth it because of the consequences of several brain injuries now is worse than a liver transplant.


Fortunately, she has a CBD, ridiculous part is;
The CBD treatment that Helps her does not get covered by the Goverment
(And this CBD is very expecive to get to the country) That she is just a KID, doesnt matter for the people in the Goverment at all, it seems like.

If we just could atleast have this covered, so we didnt have to fight agains the Goverment on top of all we are going true, and little Zarah has to go true.
Every year we have to apply again to try get it covered, and every year its the same. Not a Dollar from the Goverment of Norway.

Everything to help Zarah, to help her true the pain, to help her, yes Survive, we have to cover with our own pockets.

Thanks to many good people we atleast get some help, to cover some of the costs for this... Its wonderfull, but it feels so wrong that it has to be done like that, to save a kids life.

Bless you all.
Bergljot Larsen (Zarahs Mom)

We will come with more updates when we know more about the Battle little Zarah Angelica is going true.
Really hope some more of you out there can help with a few dollars, and hopefull share our Gofundme page.

Please follow to get the updates first.

Thanks a lot to all of you who are helping and planning to help

Friendly
Sig

(Sorry if there is a few typos, but hopefully you all understand, if something you wonder about, just contact me -Sig)

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Update posted by Sig skeie On Sep 26, 2018

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 those of you that understand, or knows anything about the Aicardi Syndrome, can understand what theyr going true... if you dont know a clue about it.


Be happy your kids never got it. Or never will get it.

Allso I like to mention Zarah is member of the Aicardi Syndrome Foundation in USA. Just for info.

Now they are back in the blog community again, it's weird ... Several days without writing posts..Zarah's mom likes to write, but the way they have to do it on gets so strange. It gets so much trouble to write about, and much is about a system we are located in that does not work as it should. She would probably never have started blogging if they do not need all the support it provides in this desperate situation. .

Their only rescue has been to expose them completely to all of Norway through the media and now the whole world. Media has been their rescue so far. THEY LOVE MEDIA! They had never come any way without being open and honest about this. You can not sit in silence if things do not work in this country, you must spread and ask for help. And YOU MUST NEVER GIVE UP!

Zarah Angelica continues to be unstable due to the disease, but now she has been so bad that it has been creepy. She is so incredibly tired, unable to keep her head upright.

So here is some of what Zarahs mom has been telling about the situtation at the moment:


"Zarah`s mom said Now I've had infinite many hours in her chair, holding her to give her what she needs most-love and safety .
❤
But suddenly in the night we heard laughing and babbling in the baby call. We all ran into her, Zaras` father Carl Fredrik
filmed and we smiled in happiness WHAT a bunch of happy people we are when things go well I have to laugh. Every little sign of change in her positive direction is so GREAT LOVE here in the house, one forgets everything else and happiness breaks in every cell in the body.


It is incredible how much her form of day affects the atmosphere in this house. One is basically locked 24/7 with her, but everything is so different when she's so weak.

Then you will have extra peace in the house, and you wonder what the result will be.

We check saturation, wonder if she needs oxygen or if she will manage to get through this time too.

We must pay attention and take care of Leander too, so he does not end up being depleted by the whole thing. On Monday there was a planning day at the preschool so everyone was free. then he had to visit his cousin, who is at the same age as Leander.
And it was so nice.Leander had the time of his life, so he would not go home again lol 🙂 Good for him to get out of the house, not just to be among us all the time. So I understand he would not come home 🙂




Then it was time for Zarah Angelica to sleep, when she fell asleep I went to the US side: Gofound Me and looked for Zarah Angelica's fundraising.
I was really shocked, because her side was nominated to get paid 4000 in Norwegian Kroner by the GoFoundme Team.


Every day and night, our local hero is working from Åkrehamn, Norway So amazingly done by him that he sits 24/7 every day and night all the weeks to help our dear Zarah Angelica ❤

It's amazing that the United States The most trusted free online fundraising platform should support our girl.

Think if an organization or Other here like the government of Norway if they were so
generous in helping sick children .... you and your wify (Sig & Anita) are admirable and we thank you from the bottom of our heart. WE LOVE YOU!"

FOR MORE INFORMATION ABOUT OUR FUNDING PAGE WITH GOFUNDME CLICK BELOW!

TREATMENT FOR ZARAH ANGELICA

Well here you had a little update about Zarah Angelica and her familys daily life, and battles. We hope YOU out there will be a part of making theyr life better for Zarah Angelica.

Thanks for Any help and Donations, that you can manage to donate.

Hope you all will follow our trip with Zarah, please follow this page and you will get more infroamtion what is happening around Zarah and her family's life and battles.


Thanks you all for your time,

Yours friendly

Sig & Anita


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Update posted by Sig skeie On Sep 16, 2018

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 that it will be a little better atleast soon.



And on top of this they Called from the Haukaland Hospital, where the Family was ready to leave for with Zarah for more tests right after the weekend. They got told that the meical tests, and the time to be there has been postponed for an other three weeks.

This was a real big dissepintment for them all, as they allready have had 2 of those postponed before, so this was the 3rd time. Just imagen...if must been very hard.

So hopefully the Hospital now, do as they should be done very long ago.

The Family really wonder the state of Zarah's brain.

There are also many other interventions that are planned for Zarah in anesthesia. So now I really hope they get this trip to the Hospital. I believe it is enough for the family now, with this seriously ill little princess.

One positive message the Family got atleast, a letter from the National Hospital - so in November there will be liver status control.

For now this is the last information I have about Zarah.

And again I ask you all to try help as good as you can, by donating some money, every dollar counts. Allso a good help is if You sharing this via twitter, facebook etc.

Thanks a lot that You care, and want to be a part of helping Zarah and her Family!

(if you tweet about Zarah at Twitter, please use hashtag zarahangelica in your posts)


Yours friendly

Sig



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Update posted by Sig skeie On Sep 12, 2018

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 wellness. And afterwards a long cozy moment in my lap in the chair with large doses of Love and enjoying the moment


We got hold of a used delicious trolley bag, Here we love recycling. Both economically and environmentally :) She remained lovely and warm in here, it's so difficult to keep the temperature steady on her. Especially feet and legs, so when we use the empty carriage bag indoor :) At least when she's cold we use it often.


Not the same sparkle in his eyes now, she is not herself. And we dare not risk that she becomes ill before she will be sent to a hugh controll at Hospital in about 1.5 week.


Then she will get into general anesthesia to take MRI of the head and spine. We have long wondered how it would go.We will try update you on her journey there. So it's going to be incredibly exciting if there are any changes in the structure of the brain. And how things have otherwise changed.

This was just a short post, about how it is at moment, and that you all get information about share, and her daily life. More will come. And as told Hospital in about 1.5 weeks, hopefully with some good informations and feedbacks.


Hope you all will keep sharing the need for HELP to Zarah Angelica, and remember all #donations counts, to keep the fight and her pains away.

Thanks to all who helped so fare, and thanks to all who planning to do, and sharing this site will be a hugh joy.


And dont forget to Follow us here at this page. Thanks.

Yours friendly

Sig & Anita


PLEASE SHARE THIS #Fundrising #Zarahangelica #dogood #donation #helpinghand #savealife #retweet

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Update posted by Sig skeie On Sep 02, 2018

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 other children have been exposed to much after Zarah Angelica came to the world, thinking if the state had taken care of us in our situation. Thus, medical cannabis is Zarah Angelica's health treatment.
Our daughter has been granted permission but the Goverment will NOT cover anything of it.

This is what works for her health, development and quality of life. She has a sensitive liver due to Biliary Atresia which she operated for 3 weeks old.
She CAN NOT have the same epilepsy medicines as other children because of the liver as this can lead to liver transplantation. Medical Cannabis is not considered as a drug. But for our daughter it's just that. She has intractable epilepsy, ie epilepsy that is treatment-resistant. Many never get better and have a constant attack.

When we give our daughter CBD, there are changes after a short period of time, she is more present, fewer / less frequent and occasionally so good that she plows / sings, plays and is out of touch. Thanks to the CBD, she started eating herself, she managed to sit a little without support and do things physically in a completely different way.

After a long period of illness now, apart from 6 months, she has not managed to get Bedrolite as normal, this is a granulate from Bedrocan containing less than 1% THC and 9% CBD.
This has meant that she has had to use more of Charlottes Web's oil during the illnesses, which we get in her no matter how bad she is. They have a complex flavor of chocolate and mint that is mild to taste. The combination of Bedrolite and the oil from Charlottes Web has been a fantastic balnding for Zarah Angelica's case. And the certainty is that we get her the oil when she does not take the granules in the food has been a relief. In the United States, they also have a nasal spray that is used acute, instead of Stesolid / Buccolam.
This is also a high desire to save the liver.

July 7th, we went out in the local newspaper "Haugesund Avis"after they contacted us, we openly shared our frustration that we can not cover her treatment that costs us $2500, - a month, and apart from that we have thousands of expenses for vitamins, minerals and donations we also can not cover (D-white. Magnesium. SOUL. Nigella Sativa. Sannasol. Tran. B12 .B6. Semper drops).
Many of these grants actually recommend both doctors and hospitals that they should give because they need more of them.
But yet it is not covered by the Goverment. If we say yes the "money bag" will Quickly go empty, says parliamentary commissioner and health politician Sveinung Stensland to "Haugesundsavis" Its TALKING ABOUT human life here.
Children who can die without proper treatment mean the money bag more than human life - should have been a lot of priority in terms of spending money !! There was no solution in our case, what about other children who have to grow up to witness all these frustrations and stresses daily.
Really, there is not much health prevention work in this. And it's unbelievably much work to deal with in many ways.
Something many does not see, before they are up in the situation yourself.
It's no comfort that things will get better over time, we have little time. We notice we are tired but we have to continue to work, if not, then we can not give her the treatment she has, and then Zarah Angelica can DIE from us, not to live for as long as we hoping for.
As I'm writing this my tears floods, and the sight of a children's chest is there - which I feared since she was in my stomach.
We must just stand on in Love, openness, honesty and gratitude for those who help us further!

The point of the newspaper article was to raise the costs, shortly after, we get a disturbing message from the Norwegian Medicines Agency that we will no longer be able to use Charlottes Web, which has been amazing for Zarah Angelica.
They want to use another from a pharmacy in Denmark. This is not even the same oil, neither the same content nor the manufacturer. That's a completely different oil, and it costs twice as much and it's an insulated CBD - something that will not have the same effect on Zarah Angelica. She has the best effect of synergy of everything in the plant together, and needs more than CBD alone to trigger all endocannabinoid receptors in the body and brain. We have not had any profit to take this in, but thanks to supportive people in our local community, we are now ready and strengthened to address this.
Our local community has helped us with crown rolling, buying cakes, shorts, fleas, donations and flea donations.




And we have received gifts to save on other expenses, thus more to Zarah Angelica and the family at no cost. The people stand on to help us, but the state is missing and actually worsens our already critical situation by doubling our costs and denying her a treatment that works. Zarah Angelica's monthly expenses will be at $3800, - a month if we would go over to what the state drug agency wants. On top of it, it probably will not work as well as what she's getting now!
But anyway, at that price, we are really pressured to not manage much more.
We have been struggling since she was born. Thanks to people in the local community, Zarah Angelica has collected some via some fundrising, but we can not take a break - for the money does not last. And the road ahead is hard to see." - Mother



Hope this was a little informative for you Good people out there, to see how this frustrating situation is for them at the moment.
I cant understand this, we are one of the richest country's in the world, but we cant help our own children. Its a shame, its frustrating...



Thanks to all who has donated and sharing this gogetfunding Fundriser I run here. Please share this, and if you have a few extra $ to give away, we are thanksfull.


Till next time,
Sig


Click the link below for our splashpage, where you see what You have the chance to get from us by do donations:

GET A FREE UNIK T-SHIRT



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Update posted by Sig skeie On Sep 01, 2018

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 she can.....
One of those good moments in life indeed.

Watch and Listen to lilttle Zarah's Opera here

Hope her little Song will inspire you to maybe dig in your pockets for a few dollars? Thanks a lot

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Update posted by Sig skeie On Aug 27, 2018

Zarah Angelica was granted "Akkaplaten" ... And here it became a really cozy interaction.


Watch Zarah Test Drving the Plate

AKKA-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 assistance from others can move with Akka Smart Drivers whenever they want. AKKA Smart can be used in kindergarten, at school or at home and suitable for children, adolescents and adults up to 130 kg.
The child chooses himself when he / she wants to drive or stop, and this gives a great deal of independence and freedom. It also provides increased contact, better communication and increased well-being.
You can place a wagon, seat unit or wheelchair on the drive plate. The switch or joystick is placed in the correct position for the child, and then it is only possible to drive. All seating units and wheelchairs can be used initially.

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There are more than enough people on IBO that can help achieve the monetary goal! All life is important and it`s our duty to do what we can when we can!

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