Pain relief treathment for Zarah

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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Update posted by Sig skeie On Aug 25, 2018

Zarah Angelica enjoyed herself with Rolltalk board today. She talked and was very engaged :) Its a Big joy when there are those good times where she is so obvious and nice. Those moments goes straight to the heart.



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Update posted by Sig skeie On Aug 25, 2018

VB zarah angelica cannabis KHE DOH
Here is a video with little Zarah Angelica, with the Local TV News comapny visiting. Sorry but this one is only in Norwegian. Nut atleast you folks can see a little more about the lovely lil girl. I hope we can spread the words about Zarah, and rise the Donations much higher. Thanks to you all


Zarah Angelica, with the Local TV News comapny visiting.

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Update posted by Sig skeie On Aug 25, 2018

If we reach our goal, and above, we will Donate to the research of those illness, to even help more people in this sad situation.



Skip your lunch today, could you manage that and just donate it to this cause, and savealife.



Thanks a lot.

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Update posted by Sig skeie On Aug 25, 2018

Today Zarah Angelica's parents has a
Flea Market at theyr home. We was there visiting, and we picked up a few fundrinsing
collection boxes, that we will put out a few places. And hope for more donations. Because she really need the money to keep getting her treatments. So again I urge you people to please add afew dollars when you can,



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