Recovery and Justice for Scarlit Rose

Scarlit Rose Ashcraft (formerly Natalie Marie Rose Guedes), who is known to friends and family as Rose, is a unique, passionate, and gifted music artist, writer, advocate and loving mother to two boys, ages 11 and 13. Rose is disabled, ill, and on the autistic spectrum. She is living in conditions that are unsafe for her while unable to access adequate treatment for complex medical issues related to the serious genetic condition Ehlers-Danlos syndrome (EDS), including atlantoaxial instability (AAI) and cervical spine instability (CI) - an immensely painful, debilitating, and potentially life-threatening EDS complication. This combination of factors is profoundly affecting her quality of life and putting her life at risk.

The goal of this fundraiser is to help stabilize her overall condition and alleviate the severe level of stress she is under by helping her attain a safer living environment, proper care, and a chance to heal. Left with no other resources to make this happen, we are reaching out. Rose will give back to all donors by offering the gift of her music and writing (see "Rose Gives Back Through Her Art" for details) and hopes that her story will contribute to awareness.

After enduring years of neglect, discrimination, and, at times, downright abuse from the medical system (see the “Justice” section), Rose is now suffering with multiple health challenges related to EDS. EDS primarily affects collagen (which acts as the body's glue) and presents as hypermobile joints and fragile, sometimes elastic skin, but the condition is multisystemic and can impact all body systems (more info here) and often overlaps with mitochondrial disease.

The most serious of Rose's complications is AAI and CI, which means that the vertebrae in Rose’s neck are unstable and will most likely need to be surgically fused. Rose also has problems with her musculoskeletal, digestive, and immune systems, as well as autonomic nervous system dysfunction that involves her heart and circulation. (More info below and documentation of EDS and AAI/CI here).

Rose cannot access proper treatment within the public healthcare system. This is proving disastrous to her overall health, which is on a downward slide in spite of her efforts to stop or at least slow it. EDS-specific care does exist but is primarily only available via private pay and often requires traveling abroad. This can pose a serious threat to quality of life and safety for people with EDS in many areas of the world, especially when serious complications develop, and can result in loss of life – especially for those who, like Rose, are unable to afford the right care.

Earlier this year, Rose was left nearly homeless and heartbroken after having to abruptly exit a marriage and leave her kids in the custody of their father due to her health. She is now living in a converted motel that is not disability-accessible, with no kitchen, laundry, or intercom. Should she faint or fall, it would be difficult for paramedics to reach her.

Rose is faced with the numerous costs of managing her illness, is unable to work outside of the home, is on a fixed disability income, so far has not earned much from her talents (writing and music), and does not have family who are able to help financially. I am a close friend, and I am literally keeping her alive right now by ensuring she at least has the day-to-day necessities needed to keep her condition semi-stable (see “The Current Situation”).

(***Update: Rose was recently able to obtain safer housing - just in time for her birthday - thanks in part to the contributions made so far to this campaign. Her new apartment is disability-accessible, is located in a safer area, and has a kitchen, elevator, and intercom system. Thank you so much, once again, to everyone who helped us to reach this first goal!)

Rose has remained kind, caring, and determined and has held onto a sense of humor, in spite of what she’s going through. She’s a fighter, a survivor, and a tenacious advocate who tries to rise above and find joy, no matter what. But, behind the smiles, she is barely scraping by, is overwhelmed, and is frankly in danger.

Rose is under extreme stress, and this is taking a further toll on her health as her condition continues to progress. Her nurse practitioner (whose name will be kept confidential to protect her privacy) has tried to make referrals and advocate for her with very little success and is concerned about the potentially lethal combination of barriers Rose is facing.

A small handful of professionals within the medical system are saddened by what happened to Rose and are now trying to help, but their referrals are still being ignored or rejected by specialists. As things stand right now, lack of resources and wait times within the public healthcare system (combined with how long Rose’s condition has been neglected) may result her becoming severely disabled or terminally ill – or even suddenly passing away - in spite of their efforts.

This is devastating for those of us who care for Rose. The qualities that have caused her to encounter discrimination and hostility are the same ones that make her unique and irreplaceable to those of us who value and appreciate her. She shouldn't have to lose all quality of life or die because she cannot access help that would be available if she had the financial resources to obtain it. With your help, we can put a stop to the downward spiral progression of her condition. EDS itself is incurable but can be effectively managed with the right care – which, after diagnostic information and instructions are obtained privately, can be provided thereafter by her current carers.

***Important note: Though Rose was told by an EDS-specializing neurosurgeon that she would most likely need surgery to fix her AAI/CI, the goal of this fundraiser is not to cover the full cost of the procedure. Instead, it is budgeted for obtaining second opinions on the need for neurosurgery, nonsurgical treatment abroad that may eliminate the need for it, and various other needs related to Rose getting back on her feet (i.e., alleviating the housing situation and stabilizing her overall health – see “Plan and Fundraising Goals” for specifics). If Rose cannot avoid neurosurgery, her health and environment need to be more stable so she can safely withstand such an invasive and risky procedure. Rose is currently on a waitlist to speak to a Canadian neurosurgeon, but if she is unable to obtain neurosurgery in her home country, we will have to raise the goal to somewhere in the $100,000-$200,000 range (depending on the exact costs of the prescribed procedure, travel, and rehabilitation) to cover it abroad.

Recovery to Rose means stabilization and a chance to heal after a lifetime of falling through the cracks in various contexts. Rose has been through a lot, some of which is shocking and appalling, and trauma has further worsened her health. This is especially heartbreaking for her sons, who can now only see her sporadically. For the sake of herself, as well as her children, Rose needs and deserves a second chance at life. You can help make this happen.

More About Rose’s Medical Situation

Rose was diagnosed with AAI and additional cervical spine instability (C3 through C5) over a year ago by EDS-specializing neurosurgeon Dr. Fraser Henderson. As previously mentioned, this means that the vertebrae in her neck are unstable. Having AAI/CI is like living with a partially broken neck or suffering a gradual, internal decapitation. Part of Rose’s brainstem is compressing, and her vertebral artery is being squeezed. Enough pressure on this artery could result in death.

Rose is in near-constant severe pain that she describes as feeling like the blade of an axe is wedged in the back of her head. About 75% of the time, she must wear some sort of neck collar for support, and a hard medical collar is required for sleep and heavy exertion. This instability is usually progressive, and Rose’s pain levels have increased to the point of being barely livable.

On a daily basis, she also experiences impaired mobility and energy levels, autonomic nervous system dysfunction (including difficulties with heart rhythms and circulation), intermittent nausea, weakened fine and gross motor skills, and intermittent cognitive symptoms. Most concerning, Rose has lately been having difficulty breathing after being upright for too long, which may be due to AAI/CI progression and pushing herself too hard.

Dr. Henderson recommended a specialized cervical fusion to correct Rose's AAI/CI, but this procedure is very costly, offered only by private pay by a few specialists worldwide, and generally not available in Canada. (A nonsurgical, prolotherapy-based treatment option also exists and can be utilized - but this would also be by private pay.)

In addition, many of Rose’s body systems are affected in ways that have not been thoroughly investigated and treated adequately. These issues could reach a crisis level themselves, and they especially need to be investigated and better dealt with if Rose is to undergo and recover from a risky neurosurgery.

Rose is experiencing impaired GI motility and nutrition, pain and attacks in the area of her gall bladder (suspected to be SOD , which is sometimes seen in EDS), autoimmune-like (mast cell) reactions to various foods, increased propensity to infections, and inconsistent gastric emptying. She is also mildly diabetic and is experiencing imbalanced/higher than normal blood sugar levels. Recently, Rose has experienced some improvement on the medication metformin. However, metformin can and does further upset her digestive system. EDS has also affected her teeth.  Due to these multiple barriers that affect digestion and chewing, Rose often struggles to get in enough calories, and her nurse has expressed concern that she is chronically in a mild state of starvation as a result.

Rose's former internal medicine doctor suspected this constellation of symptoms may indicate mitochondrial disease, but the associated tests he tried to order were canceled due to the cost.

Rose badly needs to see a GI doctor in particular but has been repeatedly turned down by GI and other specialists, in spite of her nurse practitioner's attempts to refer her. She sometimes has acute crises and waits hours in the ER, only to be seen by doctors who do not understand EDS and typically just brush off her symptoms. This is a disheartening, disconcerting, and exhausting experience for her.

As of late, Rose has had some very frustrating challenges regarding pain control and medication side effects that have worsened her illness overall. Rose is on a handful of medications that superficially treat some of her symptoms, but these tax the liver and kidneys (especially in a sensitive EDSer). Some of these medications either lack effectiveness or have damaging (sometimes even debilitating) side effects. For the most part, these medications are not genuine solutions. If Rose is able to access better care, the need for them should be minimized or abolished, and she should be provided with less damaging, more EDS-appropriate medications and treatment options.

Rose Gives Back Through Her Art

In return for a pledge to this campaign, we offer Rose’s music and books in digital format, including those upcoming, as well as my own poetry collection, Moonflower and Afterlight. (**Please email me at [email redacted] after pledging to receive your gift package.) Rose is a talented artist who produces melodic, catchy, and original pop music under the stage name Dreamerqueen, which signifies “seizing your dream like a warrior, no matter what the barriers.”

Rose is taking a social hiatus to embark on a project that consists of a book (Dreamerqueen – Not Under the Machine) and updated music album (both to be released and sent to donors in September), as well as project-specific content that will be shared via Instagram and YouTube.

This provides an outlet for Rose to focus the immense pain of her situation into an act of “artivism.” This project means a lot to her, especially as she may eventually lose her ability to sing if her AAI/CI progresses untreated. During this process, Rose has given me permission to be her voice as an advocate and run this campaign.

Why Support This Campaign?

For years, Rose has been a dedicated and outspoken advocate and “artivist” for a variety of causes, especially relating to EDS and autism/neurodivergence. People have been positively impacted by Rose and her insightful work. Notably, a few others have gone on to receive EDS and autism diagnoses – and, in some cases, treatment for similar EDS complications – only after learning of the condition and its symptoms through Rose’s videos and blogs. It’s an injustice that Rose herself continues to suffer.

Rose fought an intense and prolonged battle to be respected, believed, and helped, all the while documenting and sharing her story and advocating for awareness and change. (Read the full story below.) Now she deserves justice in the form of at least a partial recovery and alleviation from the excruciating pain caused by AAI and C-spine instability.

As previously mentioned, these complications also threaten Rose's ability to pursue one of her greatest passions - her music. Rose is a gifted singer and songwriter, but AAI/CI prevents her from exerting herself for extended periods of time. She often has to lie down and wear a neck collar to practice and record vocals, and her ability to be upright to play the piano is also limited.

Rose aspires to perform her music live, but this obviously isn't possible in her current state. In 2017, she fulfilled a lifelong dream by composing, recording, and releasing her debut album, Live to Dream. Sadly, even though Live to Dream has received positive reviews , it has only enjoyed limited success - largely because Rose can't get out there and promote it in person.

In spite of her condition, her voice has strengthened since this first album was released, and she has shared with me several new songs that are even better than her previous work. Frustratingly, her health is the only factor holding her back from being able to materialize them. Rose wants more than anything to continue making music but fears that, tragically, AAI/CI may steal her voice from her entirely as it progresses.

Rose is unique, smart, and beautiful, inside and out. She has much to offer, but her life and potential are being robbed from her because she cannot access medical intervention. With your help, it doesn’t have to be this way. There is still hope for recovery and a second lease on life for Rose – but her story needs to reach many people so she can finally get the care she desperately needs and deserves before it’s too late, and we need help to accomplish this.

Please consider pledging and spreading the word to help me help Rose. I am also open to any other ideas for help. Please contact me at [email redacted].

If you would like to pledge but are unable to do so through the GoFundMe platform, donations can be sent directly to Rose via PayPal using her email address [email redacted].

 - Audrey Rose Franklin, a.k.a. Violet Rose Ashcraft

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 Justice

Rose’s experiences are sadly not uncommon for people with EDS. The condition has been referred to as “the most neglected disorder in modern medicine,” and, because the effects are largely invisible, patients are often written off as hypochondriacs or labeled with damaging psychiatric misdiagnoses.

Rose suffered an especially brutal example of this because she has social communication differences related to autism. (Autistic communication and behavioral patterns are often misunderstood by medical personnel, resulting in patients failing to receive proper care.)

Rose’s autism was overlooked until she was 25, and lack of support combined with multiple traumatic childhood and adolescent experiences also led to mental health challenges. Receiving an autism diagnosis allowed her to make sense of and begin recovering from these early experiences, but stigmatizing labels that she was given during this period of her life followed her when she began to fall physically ill.

In 2013, faced with increasing pain levels, Rose made an attempt to reach out for help. Her way of presentation and communication was grossly misjudged, and a psychiatrist filed a defamatory report labeling Rose with factitious disorder. This psychiatrist has been described by others as abusive, and her hasty allegations went against a body of evidence validating Rose’s actual diagnoses. (More information is included in this petition calling for justice and accountability.)

This report caused Rose to be refused care at a crucial time. In 2014, EDS was finally confirmed in London England by Dr. Alan Hakim, a world renowned EDS expert - but only after Rose suffered a serious stroke-like autonomic crisis while traveling in the UK. When Rose returned home, Dr. Hakim’s report was ignored. In the meantime, Rose’s EDS was again confirmed by a geneticist who called her “severely affected” and also noted signs of a metabolic/endocrine disorder. Yet the neglect continued for two more years.

By 2016, Rose developed pancreatic insufficiency and ended up at an alarming 85 pounds. At this point, an internist listened to her and prescribed needed medications. Rose herself did everything in her power to research, learn from other EDS patients in support groups, and reverse the damage that occurred, but much of it is beyond the scope of what can fixed without specialized intervention – especially the AAI/CI that developed during this period.

Diagnostic imaging for this complication could only be obtained in the US by private pay. Rose had to fundraise to travel for this imaging and a consultation with Dr. Henderson. It was around this time that I reached out to Rose after finding her work. Once we started talking, we connected deeply, and another friend and I helped cover the cost of the imaging, consultation, and travel, proving the reality of Rose’s situation beyond the shadow of a doubt.

An entire year has now passed without intervention, despite Rose trying everything in her power to get help. Rose now has doctors on her side who are supportive and doing what they can to advocate for her, but resources are limited and barriers to EDS care are too high. She is now in imminent danger and, grieving the life she wants to but cannot live, she has discussed the possibility of having to request medically-assisted death in the future.

 Current Situation

Earlier this year, Rose was forced to abruptly leave a 14-year marriage that had grown increasingly difficult. She was left with nowhere to go, struggled to find housing, and is now stuck paying market rent. Rose is on disability but does not have sufficient funds left over each month to afford the groceries and other necessities required to keep her condition semi-stable. I am helping her cover this financially. It was difficult for her to accept help and to disclose that this is the current situation, but we were left with no other option.

Rose is on a waitlist for subsidized housing, but even cases flagged as urgent can take months or years. The current setup isn’t just unsafe, but unsustainable. I live far away and am a student with a semester of school left to complete. (Note: My location is currently listed as Victoria, BC because GFM does not give me an option to set separate locations for myself and this fundraiser. I am actually in the US.) I’m doing all I can to help make basic ends meet, but I’m limited in what I can provide and afraid I won’t be able to keep this up long-term.

Rose has become one of my dearest friends, and after helping her fight this battle this far, I’m terrified of the possibility of losing her – especially in such a cruel and unnecessary way. Her current situation is unbelievably horrific, and it feels like we’re trapped in a nightmare, trying to fight a battle of which the rest of the world is unaware.

I’m doing everything I can, but we need help. Rose deserves a chance to enjoy and live her life, rather than merely survive it, to be there for her children as they grow up, and to be better able to make an impact and help others as an advocate and artist. We didn’t fight this hard and get this far for it to end like this.

Recovery

Rose will always be affected by EDS to some degree, but her condition can be improved and her suffering can be minimized with proper treatment. Rose wants to emotionally and spiritually recover and find peace more than anything – and to continue to give back and make a difference through her work – but she cannot while locked in this fight for survival.

Rose is strong, compassionate, vibrantly creative, driven, and very smart, but she fell through the cracks repeatedly in various contexts and never had a chance to truly thrive. In a sense, she has spent her entire life just trying to survive. Rose grew up with undiagnosed autism, learning to cope the best she could despite bullying and lack of accommodation/understanding from teachers and other adults.

She showed great potential from a young age, especially in the arts, but had to leave school at age 15 to escape a difficult home situation. She was left to fend for herself, and, consequently, her teen and young adult life have been spent in poverty. She found herself in a series of traumatic situations throughout these years, and we are certain these situations, as well as early childhood trauma and neglect, contributed to the profound nature of her health challenges.

In spite of how bleak the current situation may seem, we are hoping, if this campaign is successful, recent events may open a new chapter in her life. Rose has been making some progress in healing and finding herself on an emotional and spiritual level, as symbolized by her recent name change. I was considering Ashcraft as my own pen name and suggested it. She loved it and adopted it as well, once we realized how perfectly the connotations suited Rose and her story – “to craft from the ashes after having been burnt.”

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Plan and Fundraising Goals

Our first priority is to obtain safer housing for Rose. (***Update: This goal is accomplished!) The longer she suffers this degree of environmental stress, the more her potential for recovery will be reduced and the harder it will be to regain stability. We also need to apply some funds to better modifying Rose’s diet to help her absorb more nutrients and calories. (With EDS, adequate nutrition is essential to prevent severe weakening and injuries and to support immune and cardiac strength.)

Rose also has dental needs related to her condition that are exacerbating AAI pain and affecting her ability to chew. (These costs are partially covered, but $1400 remains to be covered and stands in the way of going forward with treatment.) Some will also be applied to medical devices to better help joint stability (bracing, hypoallergenic kinesthetic tape) and a mobility scooter (to replace one she had that broke down and was her main form of transportation).

Unfortunately, because Rose’s AAI has progressed over the past year, up-to-date imaging is now needed. We would also like to obtain second opinions on the need for neurosurgery. There is a chance that a combination of prolotherapy, intramuscular stem cell injections, good nutrition, and physiotherapy could stabilize the AAI/CI. Consultations can be done by distance, and the private imaging needed can be done in Vancouver.

Rose then hopes to have a consultation regarding her rights pertaining to accessing care and to have medical documents officially notarized. On this note, she hopes to obtain a private abdominal MRI. If an issue shows up, this will strengthen her case re: the need to see a GI doctor.

Preparation for Neurosurgery and/or Care Abroad

If neurosurgery is unavoidable, proper investigation into Rose’s internal issues is needed first. This would entail biochemical and/or genetic testing. A rare disease specializing internal medicine physician can be consulted for this, as well as a geneticist in tandem. Even if neurosurgery is needed, it would still be ideal for Rose to receive a stem cell injection, which would optimize the chance of a good recovery and help with other aspects of EDS.

As previously mentioned, Rose is on a waitlist to meet with a Canadian neurosurgeon, and there is another possible option in Ontario. Especially if up-to-date imaging and second opinions support Dr. Henderson’s initial recommendation, one of these neurosurgeons may be convinced to attempt the fusion procedure in Canada. If this route is taken, it will be even more vital that Rose’s overall health is optimized beforehand, because this surgeon will lack experience and expertise regarding EDS.

If neither of these surgeons will take her case, Rose’s surgery will have to be performed by one of a handful of EDS-specializing neurosurgeons, such as Dr. Henderson in the US or Dr. Gilete in Spain. If this is the case, the goal amount will have to be raised significantly (within the $100,000-$200,000 range).

Regardless of what happens, all funds will go toward medical, dietary, and safety expenses in order of importance and most immediate need. They will be used with great care and updates will be posted frequently as new information is obtained. If something happens to Rose before the goal is met, the majority of the funds raised will be put into a trust for her children. Portions will also be donated toward EDS research and autism advocacy.