Because Amy Jean suffers from a multitude of auto immune diseases, all extremely rare, her entire nervous system is crashing and the fact that she is terminal, we decided to take drastic measures and temporarily moved to Fayetteville, AR for an extreme level of treatments. Thanks to everyone’s donations and support thus far, we were able to make that happen and are truly grateful and blessed! Amy was, and still is, under the care of Dr Katinka Van DeMewer from the Neurologic Relief Center (also known as Integrated Health & Wellness), and her very well educated and compassionate team of other doctors, therapists, PT’s, chiropractors and more. We managed to stay here for a bit over five weeks and Amy underwent INTENSE treatments/therapy, and a roller coaster of things I truly cannot put into words. Watching her work hard and go through all of this in order to try and gain a part of her life back was not only inspiring, but eye opening as well! Amy really does suffer, her body is failing and she is THE WORST patient to date this clinic has ever seen!
So far, the MONSTER taking Amy down the hardest and literally engulfing over 85% of her body currently, is the CRPS/RSD (Complex Regional Pain Syndrome or Reflexology Sympathetic Dystrophy aka The “Suicide Disease”. This is THE worst pain any human-being can experience and it TOPS the pain charts, as you can see here *pic taken from Amy’s IG): ￼￼￼￼￼Amy’s skin burns as though she's been doused in kerosene and set on fire, she tingles - like pins and needles and her limbs actually go numb, ALL of the time... What merely started in her left foot has spread to both legs in full, both of her hips and into her low back in less than a year. Imagine wearing pants made of sharp razor blades, wildly ablaze while being simultaneously beaten w a hammer; this is how her entire lower body feels every moment of every day. She cannot walk bc the pressure on her feet feels like she’s walking on broken glass and hot coals all at once... Amy’s hands were both sadly impacted as well, making it impossible to do basic tasks like wash her own hair, but we have managed to get her RIGHT hand a bit under control - at the very least, we know it hasn’t spread any further at this rate, thanks to all of the work Amy has done to date while being in AR. While the CRPS has also spread to her shoulders and rib area, which is also rare, we are confident in the “at - home” plan of action given to us by the team at NRC. Amy still faces life permanently in bed and things growing much worse, so we must move forward slowly, cautiously and at the pace her body and mind can withstand.
Pictured below: collage of physical symptom manifestations from the CRPS - her skin turns bright red, horrible bruising out of nowhere - unprovoked, involuntary spasms in her feet and toes (Babinski response w/o stimulation), her toe nails fall off on their own, swelling and inflammation occur as well... it’s been so horrible for her :(.
￼￼￼￼￼Amy is also plagued by Gastroparesis w Esophageal Dysphasia (paralyzed stomach and paralyzed esophagus, uncontrollable nausea and the feeling of having food poisoning DAILY. Vomiting episodes lead to gastric spasming and constant trips to the hospital. She is severely under weight -5’9”, barely hanging onto 100lbs currently and facing a feeding tube and Gastric Pacemaker in 2018 if we cannot get these specific symptoms and issues under control very soon...) Cardiac & Neuro Vasospasms (her body responds to being over worked by having minor heart attack and stroke like episodes, along w severe migraine attacks - to the point of her face going numb and being unable to talk. She will stutter, sometimes for days, black out, lips go numb, turn blue and it’s terrifying; we continually hear the term “Bells Palsy”, but are hopeful it doesn’t get that far. These are triggered by simple conversations gone on too long, stress, being sat upright too long, etc) and Autonomic Failure (Amy's entire nervous system is unable to properly communicate with the rest of her body. There is a literal disconnect between Amy’s brain and organs which *should run automatically). Amy’s stomach, esophagus, heart, liver, bile duct, bladder and now colon are all falling victim to this particular auto immune disease and are shutting down, leading to other mass complications. Pictured below is Amy in good spirits, trying to remain positive before a fairly invasive procedure that day:￼￼￼￼￼
While receiving treatment in AR, we discovered Amy is actually far worse off than we even initially realized... meaning her body has a LONG way to go to even be a candidate for certain treatments moving forward, and even stubbing her toe at the wrong angle could erase all the work we’ve done and land Amy in the hospital, for the rest of her life. Peeling back layers, Amy is also growing intolerant to insulin due to the severity of her connective tissue disorders - namely, Systemic Scleroderma. She did receive this diagnosis about four years ago at the start of her becoming sick, but that road was never fully explored. Here, after multiple tests and a lot of specialized attention, we see Amy is going to require YEARS of preliminary work before we can move along w things other CRPS patients were able to achieve within weeks! Amy is not a standard CRPS case and falls into a 1% category... due to the recent news, we have decided to come home and continue care from the comforts of AZ and so Amy can be with her service dog and loving cats - it’s all about balance and we feel it’ll do her good overall to lease an ARP machine ourselves and continue her scheduled care, to the “T”, from home under the guidance of Dr K and two therapists via Skype, email etc.
(feel free to read more about the facility in which she received care over the past month and will continue to be under the care of, long distance, at https://seeingyouwell.com ).
We are keeping Go Fund Me open as the cost of the ARP machine rental and continued care from home is going to be quite expensive, not to mention all of Amy’s other continued need for medical care. This will be the rest of her life, and while we work on getting Amy squared away w disability, we do need financial assistance.
￼￼￼￼*****This is where YOU can help! And we thank you for it!*****
With Amy being out of work for over a full year to date, and my fiancé and I being retired (currently home and taking care of Amy full time), we aren’t anywhere close to having the funds required to pay for all costs associated w treatment, travel, etc. and naturally, insurance won’t cover a dime since this is all new wave level type care.
Standard treatment time is 8-10 weeks; however, we’ve been told that Amy is looking at an INDEFINITE amount of time under care. Her situation IS PERMANENT, these treatments are to prevent her from growing worse, ending up in Hospice care and to help her better cope/manage the severe and crazy day to day symptoms.
With your support and a little faith, Amy and I are confident we can meet this goal, in full!
Asking for help isn’t easy, but it’s something you’ve all made possible, you’ve actually made us feel comfortable and at ease with this process and we thank you for welcoming our cause with open arms. The stress, emotion, tears, sleepless nights - all of it will be worth it someday, we can feel it!
I couldn’t be more elated at this opportunity for my daughter! It’s all thanks to YOUR kindness and generosity that we can afford to take this chance, and it truly means the world to our family. I cannot put into words the gratitude and appreciation we both have for everyone’s consideration and compassion! ￼￼￼￼￼Thank you for taking the time to read and for donating to our cause, any amount helps and is *greatly* appreciated! Please keep in mind, if you cannot donate, please share, it all helps and it all makes a difference ❤️.
UPDATE: Amy has already received FIVE full courses of treatment and is seeing some pain relief in her right hand! Amy’s CRPS has consumed over 80% of her body at this point and Amy has been discovered as the WORST patient to date at this clinic!! She is a bit overwhelmed and absolutely exhausted, but we are doing our best to keep her well rested and amply comfortable in the process. This is a slow moving process and we can only do small steps forward at a time... if we push too far too fast we risk adverse reactions and making Amy’s situation even worse than it already is, so everything is being approached w extreme caution. Unfortunately Amy has started to suffer from some additional ailments, things that began to cause issues prior to our trip out and are growing worse w time, we’re hoping treatments nip new issues in the bud and nothing gets derailed by a hospital stay anytime soon.
BIG NEWS! : We are planning (Amy mostly) to keep a blog/journal of her progress at the NRC treatment facility in AR during her treatment stint, this winter and early spring. Everyone who has already donated, and provided an email address, will automatically receive notification and updates in regards to this blog/journal - including pictures and video from inside the facility and during actual appointments/treatments. Thank you for your donations and we look forward to sharing our full experience with you!
We really want to raise awareness and bring light to these awful auto immune diseases, the battle people fight to simply have any life at all, and to gain insight of this doctor and her teams’ success w Amy and her specific, rare case. Can they actually resolve any of this and reverse some or all of Amy’s symptoms? Will she be able to walk again, free from the wheelchair and possibly even the walker when at home or out in public? Will she be able to eat normally again, gain weight, stay out of hospitals finally? What quality of life will Amy return to when we leave the facility in March 2018, and what happens next? We want to answer these questions with you, share the journey, every step of the way.
Amy will not be sharing these feelings, posts and pictures/video on social media simply bc it is so personal and an intimate part of her and our world. The goal is to raise awareness on every channel; however, the masses will be limited to a specific point of view. For those who have contributed to our campaign, you have gifted us the ability to go and receive this level of care, you are exactly who we/Amy wants to share this with and we are excited to do so.
If you have not yet donated and would like to follow Amy’s journey of healing in AR, through her personal perspective, please consider giving to our campaign and signing up. Simply click “donate” - ANY amount is welcomed and appreciated - once your email and donation have been submitted, you’ll automatically be on the email list to receive updates, including the blog and all pictures/video during Amy’s entire three months of specialized treatment care :)❤️
(if you’ve donated or would like to donate but prefer not to be on our email list, simply click “unsubscribe” when the “thank you” email comes through post donating, or you can leave your email off the form.)
Thank you all again, much love and light. We are truly blessed! You are truly a blessing!
(For more information on the Neurologic Relief Center in Arkansas, where Amy will be receiving treatment, click the link below ⬇️)
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