URGENT - LIFE SAVING MEDICATION FUNDRAISER

[Richard Fox]

Dear all Members,

As some of you are aware my wife suffers from many medical conditions, one of which is a Connective tissue disorder called Ehlers Danlos Syndrome, this can also affect the gastro system (Gastroparesis) .
EDS causes problems with her swallowing (Dyspagia), gastro, eating and not to mention her joints dislocating on a daily basis.
If anyone would like to read more about EDS and an explanation then theres a good link to info here:

https://www.ehlers-danlos.com/

Since 2012 she has been unable to walk and is now confined to an electric wheelchair, as she currently needs surgery on her neck due to the instability (Cranio Cervical Instability) again the Health Insurance will not pay for this as the only Doctors that fully understand this condition are either in Spain or America and the surgery costs around 150,000 euros!

Due to her complex illnesses and allergies (MCAD) she is also unable to take the standard medications, so she was offered by the Doctors here an alternative.
Unfortunately the medication is not covered anymore by the Dutch Health Insurance despite the fact that the Dutch government make the medication and export it to the world. My wife took the Insurance company to court last year and unfortunately lost against the big boys, which is not surprising as they are the 2nd largest insurance company in Europe. The insurance also offered my wife Euthanasia three times rather than paying for her medication costs, she's only 41 years old!!!

Since loosing in Court we have had to find the funds each month to pay for my wife's medication at a cost of approx 1500 euros as without this medication my wife will starve to death.
Since last Thursday the Insurance company has now decided cut off our entire income source as they have refused to renew my wife's Home Care package as another way of retaliating due to taking them to court!!!
As you can imagine this has caused a huge impact on our family as we now have no means of income to sustain paying my wife's medical costs as well as living costs!

If anyone can donate at all, I would be most grateful!


https://www.paypal.com/pools/c/8BO0...gN7xOj-vhRKF1wfdL31LbzUMjl7lBkRekVRf_BxpI0B38

 

[Reverend RobP]

I will gladly donate come payday. So sorry to hear what you and your wife are going/have been through. Best wishes to you both and hope you get some support for this.

 

[Matt_B]

This sounds terrible. Can't believe they could just cut her off. If you haven't already I would suggest get a Gofundme page set up as well. try and get the message out on social media/local news with the link. All the best of luck to your family.

 

[roo32]

I'm sorry you're stuck in such an awful position; insurance companies can be so uncaring sometimes. Are there any options to move to another insurer?

I really hope you can find a way forward. Wishing you all the best ❤

 

[George322]

Get the media involved. Not just local media - hit the nationals and internationals.
Write to the Government and tell them what you are going to do. They won't want the bad publicity.
Move back to the UK.
This is heartless and cruel.

 

[RuskinStreet]

I will gladly donate come payday. So sorry to hear what you and your wife are going/have been through. Best wishes to you both and hope you get some support for this.

Likewise.

 

[RuskinStreet]

I'm sorry you're stuck in such an awful position; insurance companies can be so uncaring sometimes. Are there any options to move to another insurer?

I really hope you can find a way forward. Wishing you all the best ❤

Which insurance company would take the poor girl on? In the UK pre-existing conditions are not generally covered and if they were the premiums would be horrendous. Is there not a Dutch "NHS"? Or are you not entitled?

 

[diable]

I read this earlier and have thought long and hard about this and your families situation, a few pennies/pounds here and there won't help and the best plan of attack is as already mentioned.

Set up a Gofundme page

Get the ball rolling by getting others to push it, get the press involved, all social media outlets, shame the insurance company, tell the world what they have offered, get your local version of your MP involved as thats their job to help, try to get support from Queen Máxima and remember if you shout loud enough then your voice will be heard.

Thats all I can think of at the moment.

 

[dognero]

After a little more of your cash HERE too.
You could win this embroidered with your own text (worth £25)

 

[Highway Dave]

I will gladly donate come payday. So sorry to hear what you and your wife are going/have been through. Best wishes to you both and hope you get some support for this.

Done, i believe every little helps---good luck with this

 

[RuskinStreet]

Picked my number....
don't forget to use "friends & family" on paypal!

 

[Richard Fox]

Done, i believe every little helps---good luck with this

Thanks @Highway Dave much appreciated bud!

 

[Highway Dave]

yeh, picked a number as well----but then i like the elephant

Picked my number....
don't forget to use "friends & family" on paypal!

 

[Richard Fox]

Get the media involved. Not just local media - hit the nationals and internationals.
Write to the Government and tell them what you are going to do. They won't want the bad publicity.
Move back to the UK.
This is heartless and cruel.

Which insurance company would take the poor girl on? In the UK pre-existing conditions are not generally covered and if they were the premiums would be horrendous. Is there not a Dutch "NHS"? Or are you not entitled?

I read this earlier and have thought long and hard about this and your families situation, a few pennies/pounds here and there won't help and the best plan of attack is as already mentioned.

Set up a Gofundme page

Get the ball rolling by getting others to push it, get the press involved, all social media outlets, shame the insurance company, tell the world what they have offered, get your local version of your MP involved as thats their job to help, try to get support from Queen Máxima and remember if you shout loud enough then your voice will be heard.

Thats all I can think of at the moment.

My wife has spoken to the National Media before Corona happened and they were going to run the story about the court case for my wife medication refusal but then Corona hit and he said there were more pressing stories!!!! She did locate his number today @George322 and will be contacting him again tomorrow. Also she has called all the Human Rights Lawyers in this Country and no one will help without thousands of euros and even then they don't see any chance of winning! Crazy thing is one of the Human Rights Lawyers is our old neighbour from North Holland and he even refused to help us or even look over my wife's case!

Unfortunately there is no Dutch NHS, everyone over 18 in The Netherlands has to have private Insurance by law which is a minimum of 100 euros per month! With my wife's conditions I have to pay these t***ers 410 euros per month and they do nothing for us now, except make our lives a leaving hell! Unfortunately the medication my wife has is also not paid for by the NHS, only privately in the UK and actually costs more than The Netherlands as it has to be imported. This is the only medication my wife can use to survive as all other medications she is allergic to, even a Paracetamol and many alternative medicines she cannot even tolerate!
Unfortunately the Dutch Royal Family are all for show and talk a big game!
The reason my wife setup the paypal fundraiser is to avoid the charges that Gofundme and other fundraising platforms take for their service (anything from 2.5 - 5.5%)

 

[Snapperman]

Thanks @Highway Dave much appreciated bud!

Hi Richard respect to you and your family sorry to hear about this sad situation keep your head up bud we're all with you number done stay safe

 

[Richard Fox]

My wife wanted me to post a translation of one of her Dutch Doctors that wrote this letter for the Court and they still refused hiding behind the fact that there is no Scientific proof that this medication works, even though the Dutch Government make it and put there Royal Medical approval stamp on it!


Medical statement requesting reimbursement of

Dear Colleague,

I would like to ask you to make it possible for a patient with her very burdened medical history to reimburse her only active drug Bedrocan 5 grams.

For her extremely complex medical history, I would like to refer to the attached list of diagnoses and treatments.

Her main problems are

1. Ehlers Danlos type 3
2. Morbus Behcet
3. Gastroparesis which makes it difficult for her to maintain her nutritional status.

Recently a publication was published in the American Journal of Gastroenterology, Jehangir et al. The abstract goes here.

In this article it is made clear that for patients with gastroparesis cannabinoid is one of the few treatment options.

Due to the many intrusive problems, the patient has a very poor quality of life. In fact, cannabis is her lifeline given that it is only thanks to this drug that she can maintain her body weight. When the cannabis is discontinued, her body weight will slowly decrease to a BMI that is incompatible with life.
That situation is, of course, unthinkable.

Finally, I regret to inform you that there are NO other treatment options available for the patient. This makes the situation all the more dire.

I assume you also see the patient's extremely difficult and complex situation. That's why my urgent request to use the existing leniency arrangement for her.

Looking forward to your response.
I remain with highest regard and best regards,

Medical Center ………………Dr…………

 

[RuskinStreet]

My wife has spoken to the National Media before Corona happened and they were going to run the story about the court case for my wife medication refusal but then Corona hit and he said there were more pressing stories!!!! She did locate his number today @George322 and will be contacting him again tomorrow. Also she has called all the Human Rights Lawyers in this Country and no one will help without thousands of euros and even then they don't see any chance of winning! Crazy thing is one of the Human Rights Lawyers is our old neighbour from North Holland and he even refused to help us or even look over my wife's case!

Unfortunately there is no Dutch NHS, everyone over 18 in The Netherlands has to have private Insurance by law which is a minimum of 100 euros per month! With my wife's conditions I have to pay these t***ers 410 euros per month and they do nothing for us now, except make our lives a leaving hell! Unfortunately the medication my wife has is also not paid for by the NHS, only privately in the UK and actually costs more than The Netherlands as it has to be imported. This is the only medication my wife can use to survive as all other medications she is allergic to, even a Paracetamol and many alternative medicines she cannot even tolerate!
Unfortunately the Dutch Royal Family are all for show and talk a big game!
The reason my wife setup the paypal fundraiser is to avoid the charges that Gofundme and other fundraising platforms take for their service (anything from 2.5 - 5.5%)

Meanwhile, here in the UK, the government "compensates" unemployed people on benefits to cope with the "trauma" of covid at a cost of billions. I worked throughout 2020 without annual leave and ended up north of £2000 (of actual cash) worse off! Go figure...
I feel for you Richard, as much as a small community like ours can contribute, it barely touches the sides. You need an immediate response, even if you could find a good legal guy to go pro-bono, time is your (and your good lady's) enemy. I wish you both well in your fight and pray for a happy outcome.....

 

[diable]

I can under your concerns regarding Gofundthemselves but it has a far higher reach.

I assume in Holland as in the UK she would have free treatment if she was in prison, civil disobedience chain yourselves to the most vital business/infrastructure that would then cost the companies as that will garner media attention, just look at extinction rebellion and the likes in the UK.

 

[Kermit]

Also Google 'celebrities with ehlers danlos syndrome' tag them with your story, get all of them and their fans onboard too.

 

[Richard Fox]

I can under your concerns regarding Gofundthemselves but it has a far higher reach.

I assume in Holland as in the UK she would have free treatment if she was in prison, civil disobedience chain yourselves to the most vital business/infrastructure that would then cost the companies as that will garner media attention, just look at extinction rebellion and the likes in the UK.

Also Google 'celebrities with ehlers danlos syndrome' tag them with your story, get all of them and their fans onboard too.

Unfortunately my wife is mainly bed bound and she needs 24 hour care, so unfortunately I have no time to do anything outside of the house. I would love to chain myself to their building if I could!!!!
When we do have to go to any emergency hospital appointments we have to use my son's Mini at the moment which is not desirable for someone that cannot walk at all, so the fight to fix my Elgrands is also in the mix! Trying to fix the car and look after my wife is nearly impossible hence why its taken me since the 8th May to just get the engine apart!
My wife does actually knows a lot of them with EDS as she also setup and runs her own EDS charity from her bed, but recently she cannot do this since having to cut back her meds, so she feels sad at the moment as she is normally the one that helps others in the EDS community!
Currently she's having to have IV fluids every week now as cutting back the medication means she can barely swallow and liquids, unfortunately her veins struggle to do this as she is already dehydrated so her veins are invisible! The nurse that arrived just now informed my wife how nervous she was which is not very useful when my wife has medical PTSD! lol