Support/fundraising page

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Rosie’s Fight To Live (Fundraiser’s Full Write Up- hyperlinked to main go fund me page)

(click link above to access ability to donate, read below for full story and news links)

Hello Everyone :)

Intro from the Go Fund Me (and if you have already read this part, please skip to below!)

Dear Supporters/Readers: For those of you who don't know, my name is Scarlit-Rose Ashcraft. Friends & family often call me Rosie, and I'm artistically known as Dreamer Queen. I’m a music artist/producer mom of two teen sons, creative fashion lover, survivor and advocate. I'm living with an unusual and mostly invisible but painful, challenging and serious chronic illness called Ehlers-Danlos Syndrome or ‘EDS’ (Read my About Ehlers-Danlos Syndrome page HERE.) I’m from Victoria, B.C. Canada. I aspire to continue developing as a music artist, in spite of immense challenges, and I also hope to help make a difference in this world by giving what I have to offer advocacy and artivism wise by sharing my own story, experiences and reflections through music, poems, writing, videos and social media. As stated on my EDS page, EDS is a challenging and painful systemic (involves many body systems) condition which causes me many physical effects, most profoundly as this relates to painful and debilitating ligament damage in my upper neck, but also with my joints and spine and overall severe pain/moderate mobility limitations, immune system, heart and circulation, digestion and neurological/nervous system effects. I am tough, and I tend to hide and mask my vulnerability by only presenting myself selectively, but I am affected and suffer much more profoundly than in ways often seen.

As some may also know, I've had major trouble accessing proper treatment in my own home country. Sadly, this is a common problem with many EDS patients - and it really needs to change because more and more people are losing their lives via untreated medical issues that lead to deadly consequences, or, by opting for the MAiD (medical assistance in dying) program because they cannot bare their daily suffering and poor quality of life. Although I too considered MAiD in the past, I decided that I am not nearly ready to go; I have so much to still say and do, even if it’s far from easy. My music has finally been getting more widespread recognition, and even award nominations, as of late - and this too encourages me and gives me hope. I was also put on stronger pain medicine since when I felt cornered into MAiD (and was on the news about it) and this does indeed help, albeit superficially, and it will be damaging long term of course. I am already experiencing effects from that. With my current financial state, I simply can't afford to pay privately for the kind of treatment I need to get more than a merely-superficial handle on my complex health challenges, and thus true improvement and life extension. In fact, my current ‘way’ of managing is only like borrowing, and therefore I am on borrowed time.

Currently, I’m on a concerning path to an early death. I try not to think about it too much and to keep pressing forward, as I try to start the year with a better plan for financial improvement which will include opening a trust and raising my fundraising goal to the maximum amount that I am allowed to have sitting in a trust, for health related purposes, while on disability. This maximum amount is 200,000 dollars. I have fretted about how ‘greedy’ that looks, of course, but truly, medical treatment - especially when it has to be paid out of pocket and may even be out of country - is extremely expensive… not to mention various needs for living with a disability are, sadly ironically, terribly costly. I will get more into specifics below. I am also attempting to utilize a few avenues in order to earn the 1000 extra dollars I am allowed to earn without deduction of my disability funds. This is by means of things like music sales/earnings, especially on Spotify (which has been continuously growing), Freelance Modeling via a tasteful, no-nudes (but with an exclusive lingerie/bikini-of-the week section for a little exta$) account, and things like earning on YouTube via Super Thanks tips (once I get my videos going again.) If I find myself earning more than that, it’d have to be a lot more to completely break out of being stuck on disability (which may be possible, if music sales grow to a large enough amount and/or a book does well, for example.) I still hold hope that this may also be possible. I push myself hard to try and get out of the trap I am in, as well as pave a better future for my sons (which I also worry could backfire without arriving at adequate relief.) I also believe in the power of prayer, and have taken that up (I myself am spiritual as opposed to religious, but I have respect for religions.)

The Main Challenges:

I have so much I want to do in this life, but frustratingly much of my time and energy is taken up against battling with and suffering with this very difficult, frankly awful condition. EDS is a systemic condition (meaning affecting many body systems) that causes a slew of unusual, debilitating problems stemming from weakened collagen, your body's 'glue.' This info page here goes into the details about EDS and the complications is causes and below the general info shares about how I am affected and the kind of thing/s I need for my condition to improve reasonably. I need certain therapies and treatments to properly manage in a way that is conducive to healing, improvement and life extension. This especially relates to ligament damage in my neck and cranial junction which has led to instability in my upper C spine. This instability is called CCI (craniocervical instability) and is disrupting my central nervous system, and even circulation, and it's extremely painful 24/7 to the point I have to rely on pain meds because it’s only ethical for my mental health. I've been told that I could benefit from a vertebral fusion surgery in my neck, which would require a specialized approach due to my EDS (which Canada is refusing to help with, and another neurosurgeon re-confirmed that refusal this year, frustratingly.) There are also various nonsurgical regenerative therapies that help CCI, none of which are financially accessible to me either. (more about this at bottom of EDS info page.)

I've had to resort to being dependent on several meds as well as weekly IV saline fluids, and admittedly a fair but of caffeine, in order to function as best I can day to day…and vecause I am a fighter I tend to mask how bad things can be. Even still, my position is not too sustainable and it’s worrysome. I need real treatments and therapies if I am to regain reasonable quality of life and better ability to grow as a music artist, author, advocate and mom who can be there to watch her sons grow into men and lead their lives. In the mean time, I'm putting up a fight but without the financial backing I need to repair damage caused by my condition getting neglected and mistreated, by the medical system, for way too long (more about that below in news article links.) Being able to meet the specific treatment goals I need can change my current path and put me on a better one with increased quality of life and longevity.

Why I Can’t Access Treatment Today:

Very frustratingly, proper management therapy and treatment for most of EDS' complications is, for the most part, unavailable in many public healthcare systems - including and especially my own. Canada is quite bad for excluding most EDS care. especially related to neurosurgical care but also when it comes to thigns like immunology, gastroenterology and even cardiology. Even though I do have a supportive GP, the reality is that proper treatment protocols for EDS do not currently exist in Canada because the system is at fault for excluding EDS care. Unfortunately I only met my GP in recent years, after a lot of neglect and damage already happened. The way people with EDS get treated in this country is not okay, and there are some grassroots advocacy groups trying to change this. I intend to keep speaking out while here, myself. However, progress has been slow and may not sufficiently improve on time for me - which is why I am hoping to raise the funds I need for help (while I continue to speak out about changing the lack of EDS care in Canada, so that others won't have to go through what I have gone through.

Unnecessary Neglect. Ethical Dilemma and a Story That Needs To Be Told (new article links below.)

For most of my life, I suffered invisibly and in silence with processing and learning differences, and, fighting up against this unusual and invisible but incredibly difficult and painful chronic illness that not enough people know about. Ehlers-Danlos Syndrome, or 'EDS' is, again, a highly invisible yet very painful and serious condition that desperately needs more public awareness for the sake of funding for research, more available specializing doctors and overall public compassion. Though EDS is considered 'rare' it's not and it's thought that many cases are going undiagnosed or misdiagnosed. Even when it is diagnosed, proper treatment is rarely available to the patient - unless the patient is quite well off financially. All this needs to change.

Like many people with EDS today, I am unnecessarily much sicker than I ever needed to be - stuck with a very painful and diminished quality of life, with more profound limitations than necessary, because of not only having been a survivor in life from earlier on, but because of huge delays in being properly diagnosed with EDS, a lack of access to proper management ie. therapies and treatments for EDS' complications (even after finally being diagnosed) and, last but not least, because of the way I was treated trying to get a proper diagnosis... which was shocking and traumatic. Rather than elaborate on that shocking story, I will provide the links to a couple of news articles which do tell it, below. I am currently working on a book about the experience, too ... but gently and gradually as it is traumatic to open up all at once. Regardless of that, it is a story I feel compelled to tell because I feel that people need to learn about it and from it.

It truly is shocking how heavily the Canadian medical system excludes EDS, and other similar complex, chronic illnesses, from proper treatment protocols. I am not the only Canadian EDS patient in my position. Appallingly, there have been a string of people - younger women especially - who suffer from EDS and felt they've had no choice but to consider, and sometimes even go through with, the MAiD (medical assistance in dying) program offered in Canada. (I will include an example article about one such woman, below.) This has brought forth a serious ethical question about whether MAiD is being used as an easy 'back door exit' out of providing adequate treatment, and adequately liveable amount of disability income, to those with EDS and similar complex, chronic illnesses. The answer is that, no, neither treatments or disability income amounts are adequate, and this directly is causing people to become desperate.. and look to MAiD instead.

Though I too have experienced fleeting thoughts of going through with MAiD - when feeling at my lowest mental and spiritual breaking points - I came to remember that I'm compelled to live on and do things that I feel I need to do in this life.. even if that is very challenging. I have much more to do and say, and a story to tell, and I am determined to do all I can regardless of whether raising the funds I need, for the level of healthcare that I truly need, is successful or not. In saying that, I reach out in the attempt to do so, and I'm grateful for any show of support via donation whether it be large or small. I hope to regain some quality of life and time back, while promising to use a good portion of that time and energy continuing to give back in any way that I can. Thank you so very much for reading this if you've gotten to the end, and please do see below for article links.

Cast Aside, Left To Suffer - Rosie's Story (BC Disability News)

An Autistic Woman's Battle With Ehlers-Danlos Syndrome (Neurodiversity News)

Music & Interview Podcast (Heart To Heart, Pure West Radio)

Woman Featured in Pro-Euthanasia Ad Had Actually Wanted To Live (Re: Jennyfer Hatch, one of a handful of Canadian woman in their 20s-40s who has passed due to EDS, lack of treatment/resources and MAiD

I can also provide an alternate address for money orders sent by mail, for those who want to donate and are not able to via credit card or paypal online.