Ximena's Butterfly Foundation: Working to ban "Substance X"

"I can't live like this but I don't want to die either"

Randy Knol with his wife.

Article by: Randy Knol, the father of Ximena, is the founder and chairman of Ximena’s Butterfly Foundation

The title is in one sentence of what suicide is about, it’s not a wish to die it’s an escape from the life you have at that moment. It’s the biggest misconception about suicide that people think death was a choice made by the person that died, it was not.

That’s the reason why my wife and I started the Ximena’s Butterfly Foundation, for prevention of suicide by young people and young adults. 

Ximena was our daughter, our love and joy. She escaped the life she was living on February 23rd, 2018. We named the foundation after her. The butterfly was because just before her escape she wrote as a WhatsApp status “When the caterpillar thought the world ended, it became a butterfly”. 

Ximena Knol

The false promise of Substance X

Ximena used the “Substance X” as promoted by a Dutch radical group that came in the news 6 months prior to her death. On a television news show FWC came out in a poorly acted report that it was a substance that was painless, fast and certain. They made the idea of death so easy, however the promise they made was a big lie, it’s one of the most inhumane ways of ending your life. With “substance X” death is in fact inhumane. Science cases report about an agonizing five-day struggle to die, where no antidote is available.

More articles about "Substance X" (Link).

A toxic cocktail

The combination of the substance being a secret, the false promise of a painless and sure death combined with the attention from the media made it, as Doctor Boudewijn Chabot wrote in his book, a toxic cocktail. As a leading voluntary end of life promotor Doctor Chabot loudly protested the false claim made by the FWC. In the latest release of his book about voluntary life ending he wrote two full chapters as a warning not to use “substance X”. With our permission he wrote the story of Ximena, our butterfly.

End of life terrorism

Three weeks after Ximena escaped her troubled life we warned against this substance through the media with a news article starting a wave of attention. We told our horrific story for the first time in a Late night talk show. I called the FWC radicals “end-of-life-terrorists”, which was apparently a good description because it made the headlines in many newspapers the next day. 

I literally said: “The FCW is so radical I call them end-of-life-terrorists, for them the goal sanctifies the means” They are so radical, they had the plan that after a six month membership you could acquire the substance, no consulting no questions asked.

If it’s yellow and curved it’s not an apple.

Despite all the secrecy, within an hour of its televised release, two names of what could be "Substance X" went viral. I explained it in the Late Night Show as: “If I explain it’s yellow and curved and needs peeling before you eat it, everybody understand it’s not an apple” Their description was so clear that the two substances went viral and began to be promoted as the substance. Two chemical compounds with an almost similar effect on the human body. Unfortunately Ximena found the names too, for 1 euro and 55 cent plus €9.95 p&p she bought 125 grams, sufficient to kill 24 persons.

It was very visible, Ximena laid in her bed as blue as jeans, we were only allowed to see her for a few minutes from a 2 meter distance. The prosecutor demanded a full autopsy, which hardly ever happens in The Netherlands after suicide. They were clearly looking for evidence regarding the FWC. Ximena seemed to be one of the first victims of Substance X.

Ximena was taken away, nobody informed us about anything, we got her back 3 days later. The coroner did an awful job, she wasn’t recognizable. Her face was swollen and dark, she was decomposing. Something must have gone wrong in the autopsy, we had seen her twice for 5 minutes since they couldn’t keep her outside the cooling. We had to say our goodbyes with a closed casket. Her brothers, sister, grandmother, other family and friends never saw Ximena.

The struggle to ban “Substance X”

After the funeral we started to get “substance X” banned. We needed to have the law changed making the substance forbidden to sell, only to be sold to companies that had a permit. In the meanwhile the prosecutor started an investigation against the FWC, big words, assisting suicide, encouraging suicide and naming it a criminal organization. As we say in Dutch “A lot of bleating, little wool” they never went further then a good talk with them and the promise that the FWC should not distribute the substance. However the FWC found their way around and where they say they don’t distribute it, they have an active role in people acquiring the substance.

A month after Ximena died we reached an agreement with resellers and manufacturers not to sell to people and companies that had no industrial use for the substances. However we carried on to get a ban by law. We had a meeting with the Ministry of health, without any result, they would look into the possibilities. More then a year later the minister of health proudly send out a statement to the press that after long negotiations they agreed in a "covenant" with the chemical industry and suppliers that they wouldn’t sell to private persons. He was showing off with what we had already established a year earlier. After a television interview we said that this was a bit late and the only way to stop is to make it illegal by law to sell and posses it. We were invited for a meeting with the Minister of health in person, our main question was “why is there no law to ban these substances” the shocking answer was, well more a lame excuse IMHO: “if we make a law then we have to name the articles in the text”. We were stunned, under which stone was our government living, if you search on google you get tens of thousands of hits naming the substance. I asked him if he really thinks that if someone wants to die, that the person will look into laws to find a way?

A covenant doesn’t work

There are still victims of the substance, the Dutch Poison Information Centre received 51 requests for info in 2020, keep in mind this is the tip of an iceberg. Many physicians know that there is no antidote for the substance. Most victims are found deceased, how many people died of the substance? 50, 100, 500 who knows we can’t get the figures. How many older people take the substance as a means to end their life as a "completed life" and how many doctors register the death as a natural cause.

The covenant obviously didn't work. On July 23rd the police arrested a 28 years old man from Eindhoven who is suspected to have sold the substance to hundreds of people with 6 confirmed deaths. He also sold a regulated anti-vomit-medicine that can only be given by doctors and he used the profits for his living costs without reporting it as an income for taxes. This thug, sorry I have no other name, is charged with assisting a suicide, trade in regulated medication and money laundering. His arrest and custody was first extended with 14 days and yesterday he got a 30 day extension for his custody. The total custody can be extended to 90 days after which he has to be brought to court, this is usually a Pro Forma hearing in which a trial date can be set.

With the arrest and custody of this “suspect” the substance has not been banned. Our foundation has located more resellers and gave this information to the prosecutor General office. We had three members of parliament ask questions about the substance and have urged for a ban. Fortunately these MP’s are also bringing the matter to the attention of the European Parliament. It will all take time but the main concern is how many lives will be lost before the ban happens.

The “struggle” has yet just begun”

Our foundation, Ximena’s butterfly, (www.ximenavlinder.nl) has been contacted by 8 suicide survivors that lost dear ones from “substance X”. We act as spokespersons for some of them and we will continue the fight to ban this substance.

We pay all costs from our private money and through donations from concerned people. Please help us in this fight by donating through our website: https://ximenavlinder.nl/doneer/