Help Chloe Live Again
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*This Fundraiser began in 2017 & is ongoing*
[2018] Our new goal: £75K, half of the overall Stem Cell price or approximately 30 cycles of Intravenous Immunoglobulin Replacement Therapy (IVIG). — for those asking about the outcome of this, in short: unfortunately it had been put on pause due to health complications, legal prescribing issues & trouble physically getting both IVIG & SC to Chloe for various reasons.. but hope is not lost, is being gradually investigated alongside management of crisis after crisis & Chloe’s continued complex care needs behind the scenes. We haven’t given up!
[05/04/2019] Chloe begun Hormone Replacement Therapy (HRT) a treatment protocol the NHS has agreed to fund 1/3rd of.
[10/2021] We are currently out of funds so truly do appreciate anything that you can give.
It’s been a hectic few years but the family aim to add up-to-date medical details & complete a well overdue campaign overview by New Years — So please favourite this fundraiser to get notified!
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Hello Everyone!
My name is Chloe Leanne and I am currently 20 years old ‘dying to live’ in the UK with an unwanted bundle of severe debilitating chronic conditions that began to develop after being injected with Cervarix— also known as the HPV vaccine— that we presumed to be safe and signed up for because of its “effective way in preventing cervical cancer.” That was 7 years ago; and we couldn’t have been more wrong. In October 2016, after many years of battling with my body, my body couldn’t function anymore and I died. Due to the severity of my damaged ANS, (a system that when functioning controls our ability to do most things suchlike regulate heart rate, blood pressure and breathing automatically and effectively), I went into respiratory arrest. I was gone, wondering into another world for 9 minutes but thankfully the universe had my back, I was yet to for-fill my purpose on earth. I was resuscitated and put on life support until my internal organs recovered and until I could breathe without a ventilator.
Someone still had a plan for me and I'm so so thankful for and very lucky to have this second chance. I make every breath count, but my life is still more than challenging... because I barely have one, which is why I am [ever so reluctantly] asking you, the public, for your help.
I am currently accepting strangers’ generous gestures of any kind to assist in relieving my family’s financial burden while we fight to relieve my feisty physical one.
Please know that anything you can offer will be greatly appreciated.
My Life Before The HPV Vaccine
Before I was ‘vaccine injured’ [a raw yet real term mocked by too many] I hiked, mountain biked, went to the park, rollerbladed to the shops, had social gatherings, went to the cinema, had birthday parties, and I had friends. I had an artistic, busy and athletic lifestyle. I was on the right road to getting A's at GCSE. I loved going on holidays with my family. I lived life to the max.
Life has always been important to me, but it means even more so now than ever, now that I'm isolated from the ‘real world’.
I Was A Dancer
I also danced 6 days a week: I loved to go to after-school sport and dance clubs every night. I really wanted to have a dance career, and now my heart bleeds with the torture knowing I may never walk again, let alone dance again.
Life After The HPV Vaccine
My hope of being a professional dancer was evidently crushed so I enrolled into what was my second best career choice at the time; fashion design— an industry I fell in love with so dearly as it was so diverse and exhilarating. Sketchbook work to Garment making, it was an alternative way for me to express myself, my thoughts and my feelings. It was as close to dance as I could get. Unfortunately I didn’t make it through the first year of college. It was more demanding than I anticipated and the workload was so heavy that it most likely contributed to the further decline in my health... I was secretly up until 3am most nights trying to finish work for my second deadline that was already 8 weeks behind everyone else. I was in and out of hospital like a yo-yo, was struggling to grip a pencil let alone draw, I couldn’t sit up at my desk longer than 10 minutes without fainting and I then could no longer put my foot down on the sewing machine pedal. I was then forced to withdraw from the course and failed the work I did produce because of my attendance.
Today, each day is a battle against never ending symptoms: constant paralysis, extreme mast cell reactions, hypoxia, syncope, bronchospasms, oedema, poor circulation, inability to tolerate changes in climate/weather, excessive sweating, enduring random and exhausting seizures that leave me with short-term memory and speech loss, reoccurring infections, periods of insomnia or hypersomnia with no in-between… then theirs the agony when meds, feed and water is being pushed down or pumped into my feeding tube. The latter is a gruelling and time consuming process that I have to endure 3x a day and persevere with, even when my body is showing signs of rejection as most of my medications do not come in IV form and the risks involved with TPN prevent me from being an appropriate candidate.
I have no choice but to ignore the shear pain and discomfort that coincides with forcing my gut to consume (not even half of) the most basic nutritional requirements to thrive on when it is screaming for respite. In addition, I have many insufficiencies and deficiencies that supplements and previous approaches have failed to control.
There are also many invisible aspects many don't see, such as: bladder retention, intermittent catheterisation, nausea, migraines, vision problems, vertigo, light and noise sensitivity, pulsating tinnitus, dressing changes, stoma/wound care, multiple bruises from daily anticoagulant injections to prevent thrombosis, a paralysed stomach, delayed motility of my GI tract, the raw inflammation and ulceration in my colon, the over active nerve endings, faulty neurotransmitters that send fragmented signals to rouge receptors delivering the mixed messages to my brain, organs fighting for vital vitamins, minerals and nutrition that isn’t being absorbed and last but not least, the intense widespread chronic pain and unpleasant “voodoo doll” sensations that aren’t necessarily visible to the naked eye.
In a nutshell, I live a daily hell on a beautiful earth... and it goes unnoticed. It’s all hidden in plain sight unless I’m willing to tell the world my story— something that many don’t want to hear.
The Impact
My adverse reaction to the vaccine and the conditions I have developed over the years has had an enormous impact on my life, therefore every person I know and love too. My mum for instance is my full time caregiver: a nurse without a diploma who has dedicated her entire existence to be in the epicentre of chaos— doing what nobody else successfully or safely can; bringing calm to every storm and providing the round-the-clock care I require on 24/7 basis with nobody to take over the night shifts. I want nothing more than for my mum to just be my mum (or whoever she wants to be) but, despite not being an actual nurse, nobody is more more qualified for the task in hand than she is!
In all honesty, I’d be dead dozens of times over if it wasn’t for her and she wouldn’t be able to do what she does if our support system (shout out to the grandparents & close friends) wasn’t in place. We are truly lucky to have family and friends that both care and understand, sadly this isn’t enough to relieve the physical load nor does it break the isolation my physical dependence has and continues to cause.
My Harsh Reality
Nothing but an improvement to my situ of health would give my mum the freedom she deserves, so she can: meet her own needs, accomplish her personal goals and actually dream her own dreams. My brother: a full-time college student juggling two part-time jobs with crazy nightshifts to earn his keep and help us get by, would greatly benefit from this opportunity too. He has spent his entire teenage life seeing his sister get sicker— gradually going from someone who could attend his sports games and award ceremonies to someone that can no longer hug, eat, speak or simply tolerate his presence and do the things he wishes I could do. He had to quickly adapt to seeing me in a hospital bed or coming out of hospital in a worst state than when I went in. He had trouble understanding why there’s no cure or antidote when he himself has researched treatments to help. On numerous occasions my brother has experienced things that no young person should have to witness yet has always been eager to take on responsibility. When I was ‘healthier sick’ he’d drop whatever he was doing to keep an eye on me (and administer emergency medications or scoop me up to and from the commode if needed be) while our mum was quickly running errands or collecting my prescriptions.
He’s been amazing.
Nowadays, I have become a ghost in my brothers’ life. Despite living under the same roof we only get to see a few glimpses of each other every month or so. He works and studies so hard- I’m so proud of who he has become and determined to hang around long enough to see him, my only sibling, become an official adult.
He needs his sister back and I so badly want to be a part of my brothers’ future. And with your generous support you’d be giving us the opportunity to do just that! My mind is there, it will just be up to my body to decide how far it will be able to go in making my current dreams [of big family reunions, meet-ups with old friends or more realistically being able to have my immediate family in the same room as me without any Mast Cell attacks, Seizures or other major health implications] become a reality!
Tommy’s Prom: June 2016
My Official Medical Diagnosis'
Myalgic Encephalomyelitis: Paralysis and loss of muscular tone. M.E is classified as a neuro-immune disease in which 25% of those diagnosed (approx. 25,000 in the UK) are severely affected; get progressively ill & never recover. Severe ME has rendered me bound to my bed, unable to walk, talk, chronically fatigued (a type of exhaustion that doesn’t go away no matter how much you sleep), and enduring post-exertional malaise for pushing my body beyond its limitations. Often something as small as sitting up in bed or cognitively engaging in a simple task (which would be considered as rest, leisure or something a healthy person wouldn’t have to think about) can be a highly stimulative activity for someone with a chronic illness like me and will need to be considered in the individuals ‘activity quota’; that due to lack of funding and understanding is the only thing in addition to psychological support that the NHS currently have to offer those who either aren’t candidates for or cannot afford alternative and/or experimental treatment.
The conditions below are considered as comorbidity’s (thought to be secondary to my ME)
Gastropareisis— total stomach paralysis; I’m fed through a Jejunostomy tube, I can’t swallow; (Dysphagia) and have a partially paralysed bowel.
Fun Fact: I only poop once every 2-3 months… unless I’m in a Eoinisophillic Colitis, IBD flare!
Dysautonomia/POTS— a condition that effects multiple functions of the ANS (heart, bladder, brain & blood vessels) as a result of autonomic dysfunction and can result in complete failure.
Fibromyalgia: severe chronic pain, musculoskeletal inflammation, central sensitisation, hypersensitivity & pain trigger points.
Fowler's Syndrome: Bladder dysmotility, Interstitial (Chronic) Cystitis, urinary retention. I have to insert a catheter up to 12x a day. I only have one functioning limb (left arm) so, for now, I’m able to do this myself .
DDD: a ‘Degenerative Disc Disease’ causing cervical, lumbar, thoracic pain and/or sciatica as a result of dehydrated & herniated disks. {a private orthopaedic consultant diagnosed this from NHS MRI. My Paediatrician at the time could obviously not interpret scans well and told me that I would probably need [an unnecessary] extensive surgery to also realign a slight curvature of my spine.} Mine is likely due to a spinal injury [through dance or from a few falls I’ve had] with internal dehydration, lack of muscular stability and cartilage cushioning caused by other conditions being contributing factors and making it more noticeable in the now.
Mast Cell Activation Disorder (MCAD): I'm literally “allergic to life”- even my own tears! I endure severe anaphylactoid reactions daily which floods my lungs with secretions and results in a lot of swelling (oedema) and rashes/hives (urticaria). Too much histamine releases in my body causing mast cells to explode (degranulate) which cause chemical reactions as a defence mechanism in which contributes to an auto-inflammatory multi-systemic response.
Non-epileptic Seizures: compromises airways, result in multiple dislocations, triggered by overstimulation/noise/light/pain.
These particular seizures are possibly linked to, if not caused then exasperated by, my pituitary gland being starved of ‘survival hormone’ over the span of 5 years.
Adrenal Disorder(s): undetected and untreated for half a decade!
- Initially high cortisol levels (Cushing’s Syndrome) were recorded in 2017.
- As of June 2018 I have been in and out of Adrenal Crisis due to untreated HPA axis dysfunction/Addison’s Disease (low cortisol and inadequate secretions of hormones by the adrenal cortex).
Hyperthyroidism/Thyroiditis- Secondary to Sepsis a potentially fatal blood infection which I have fought six times.
Anaemia: of unknown type. Potential problems with bone marrow, how my body is metabolising protein, and/or due to the virus of the sympathetic nervous system.
Mitochondrial damage: inadequate quality of ‘energy cells’ result in dysfunctional and poor control over my muscles & internal organs.
Metal toxicity, Multiple Chemical Sensitivity, query EDS-hypermobility type: a connective tissue disorder, the MTHFR mutation...and much, much more that is still unknown or in the process of being diagnosed.
My Current Situation & Outlook
Today, my life is complicated and my future is uncertain. Tomorrow is another day but I never know what tomorrow or even the next hour will bring. I have the constant fear of another respiratory arrest or the possibility that I will go to sleep and never wake up luring at the back of my mind.
I’m hooked up to and 100% dependant on multiple machines to keep me alive. I rely on my CPAP machine and have a device that indicates when my lungs aren’t getting enough oxygen or if my sats have dipped below my threshold (which is 88%)
Being chronically sick has shattered my goals, plans and my dreams
Being symptom free is a lot to ask, but I'd do anything to have the healthier life I had 6 years ago. I do wish I could have my teenage years that had been stolen from me back. However, as much as I despise being so ill, ironically I would never erase the experiences which have come with the pain, sickness, heartache and all the horrible events that I have endured during my 'teenhood'. Why? because despite a life full of hardship, hurt and negativity in addition to a bunch of severe diagnosis' following from something that was meant to protect me; being unwell has come with many positives that strangely balance out the negatives...
My 'new' life created a new story with blank pages. 'Chloe’s Chronicles of Chronic Illness' began. Each chapter was unexpected- I was forever wondering into the unknown with a variety of new adventures, new goals, new dreams and a brand new altered perspective on everything. I knew my story would be written and printed as new things occurred, its history; and no matter how much I would like it to disappear I know it can never been undone or deleted. That's why I decided to find the best in every situation to create a story worth being told. Therefore having a purpose and a life that’s still very much worth living until the bitter (but potentially beautiful) end.
This never ending fight for my life has taught me an awful lot. I have witnessed and overcome many things that people will ever do in their lifetime— and I am proud of that.
For 4 years I have lived my life lying down in a darkened room. I’m trapped in my own body and a prisoner in my own home.
I have two tubes surgically placed in my abdomen: a Gastrostomy to free drain the overproduction of bile that my stomach accumulates as a result of MCAD while also preventing me from aspirating (vomiting into my lungs) & a Jejunostomy which bypasses my stomach- this is where [due to my mass amount of allergies/intolerances] I “eat” a synthetic elemental feeding formula (apposed to my preferred diet of liquidised raw & real food) at an agonising 22ml per/h rate for 23hours a day. I also “drink” 1.5L of ‘special saline’ (a sugary and salty mixture that a pharmacist compounds with vital ingredients: vitamins, minerals & calories required to sustain my life without the need of TPN on a personalised & much safer/more controlled level) via a tunnelled central line— a veinous catheter that’s been threaded through my chest and internally rests at the superior vena cava; the tip of my heart.
As with most autoimmune conditions, there’s no cure for Gastroparesis. I may never get to eat again. However, My specialist is confident that in time, with the right treatment and the advancement of technology, I may regain some level of GI function in years to come. Same for bladder control,
Nevertheless, I still can't predict the future and I can't plan ahead.
Despite the fact that the vaccine seemed to have interfered with my once healthy menstrual cycle (before halting completely in 2015) requests for Smear tests/gynaecological examinations have been declined multiple times. I don't know if I'll be able to have children—many women are infertile or in irreversible ‘premature menopause’ curtesy to the content of Cervarix or ‘new & improved’ Gardasil. Some have even developed the cervical cancer this vaccine is said to prevent from as young as 17 years old.
We as a family don’t have much confidence in the system and many doctors as a result of that. I have lost a few good NHS doctors along the way due to lack of funding for my conditions; individually and as a whole. Many have seeked early retirement or moved on to privatised practices because they don’t agree with the system either.
It took six years for a yellow card report to be filed and for the association between vaccine injury and chronic illness onset to be on paper, documented in my notes. Furthermore, it took 5 years for the NHS to do basic endocrine [pituitary, thyroid & cortisol/hormone] tests which is why we highly doubt that anyone has ever ran precautionary oncology blood work either. So, just like how I was unaware of my adrenal function, I could be riddled with cancer and not even know.
Yet, somehow... amidst the hustle and bustle of routine and unpredictabilities:
“I wake up everyday to tackle the torcher
because I believe I deserve to win this war.”
I may have a broken body which persistently disobeys me, however I am lucky enough to be a mentally strong individual who's managed to build up her own coping mechanisms and psychological techniques despite negligence and terrible past experiences. Despite hardship I find happiness. Despite pain I find inner peace. I have discovered the inner strength I never thought I had. I understand how much willpower, determination and endurance it takes to get through every minute of the day. I know who I am. “I'm Chloe and I am a warrior.” Life has mounded and sculpted me into the wiser, stronger, more educated and more thankful woman I am today; that’s my mantra anyway! Mindfulness may help others in my situation, and yes it will keep the demons of depression and anxious thoughts away. But, no amount of mindfulness and positivity will change the immense pain I endure every day or magic the mobility and loss of sensation back into my once healthy, sporty, dancing body of mine.
This is where you can get involved :)
Whether you're anti-vax, pro-vax, pro-science or a skeptic it's not time for a heated debate; I'm severely sick & I'm pleading for your kind gesture. I'd truly love you to be a part of my journey and your help would mean the entire world to me. As much as I loath asking for money, many families that I met in the hospital (where I lived for 11 months in 2016) suggested I do so and tried to convince me; then eventually Larry Cook of www.StopMandatoryVaccination.com finally persuaded me to do so to help with the costs of the following:
✨| Ways Your Financial Contributions Will Help |✨
General Medical Costs
For anything that will significantly make my life easier from medical appliances to reclining wheelchairs to life changing housing adaptations. My initial goal was to fund a fully reclining power chair [approx. £15,000] so I could at least go outside and be with Mother Nature— Unfortunately my body had other plans.
Pain Management Costs
For example: Reiki healing 6x a week (a controversial alternative treatment that works for me- it's keeping me out of ICU!!), CBD oil (now allergic to the only water soluble solution I could tolerate), Pulsed Electro Magnetic Frequency Healing (PEMF), Hyperbaric Oxygen therapy [supplemental high-flow oxygen is now being provided by the NHS.] Various braces/splints to support and/or realign joints & limbs.
Specific Medical Costs
Find + Pay for doctor(s) that specialise in conditions like mine as a result of Adverse Reactions HPV vaccine injury✔️ Specialist recommended Tests✔️ Supplements & Protocols. House appointments for full health review from Harley Street Immunologist & ME specialist, The ME Trust’s Doctor & Ambassador (with combined experience of 45 years)✔️ Emergency Phone consultations
Additional Diagnostic, Precautionary or Investigative tests: Genetic Testing, specific genes (i.e. MTHFR and COMP, EDS subtypes), ADEM, Myelitis, GBS, Lyme, Full panel of antibodies-for IVIG✔️Live HPV active proteins (currently only done on autopsies.) Adrenergic & Muscarinic Receptors✔️All sent to labs in Europe & USA. Private phlebotomist, special delivery courier, plus clinic and lab charges; Est. £500 per destination; approx. £1,500 in total.
Health Tracking & monitoring Services
(Tests or technology to determine disease progression/treatment success)
~Viatom CheckMe O2©️ Device: Half Price at £149 ✔️
~Glucose monitor✔️
~Home-to-Lab: Medichecks©️ Cortisol & Testosterone- £49RRP but I always find voucher codes or get cashback [via Topcashback or Quidco] so pay £39.50 every 6-8 weeks.
~Bioresonance/Asyra: Allergy & Intolerance. Digestive Health studies. Nutrition, vitamin, mineral, enzyme deficiency and cellular integrity profiles. I can get these via wowcher up to 88% off. Ranging between £19-£39 instead of £69-£120!
Medical intervention: the options are...Low-dose Allergy Immunotherapy (also known as a ‘desensitisation protocol’), Hormone Replacement Therapy, IV anti-virals, IVig- Intravenous immunoglobulin infusions; a type of cellular replacement (as suggested by professor+ ME, MCAD & comorbidity consultants) or Rituximab- but this is difficult to licence for those with my conditions in the UK.
The last resort but my eventual goal is to undergo potentially the most effective treatment: Stem Cell Therapy - approx. £140,000. Using stem cells from umbilical cord donors to reduce the risk of rejection and to avoid the need for chemotherapy beforehand. I would also need money to cover accommodation, travel expenses etc but we will approach this bridge when it comes to it—it’s proving VERY difficult (international laws, policies & restitutions)
The blood tests are important: they will determine where intervention is appropriate and reveal whether (private) treatment will undergo within the UK or abroad.(current total costs unknown).
Edit: [June 2017] I WILL BE RECEIVING IV IMMUNOGLOBULINS!* This will be done privately due to my complexity. It costs £1750 per cycle every fortnight for 6 months- 3 years. As the dosage gets higher unfortunately so will the price. We've been told that it's life prolonging not life changing because too many of my immunoglobulins are dead/damaged as are my organs and bodily systems compromised. I’m essentially “too far gone” for it to have the effect it would have on a healthier person. Nevertheless, we will not be discouraged and will be using this therapy method as a strengthening treatment to get me somewhat 'fit to fly' to the US for Stem Cell Therapy, which will save & significantly alter my life! Watch this space!!
*My first cycle began on 3rd November 2017
If You’ve Gotten This Far — Thank You So Very Much!
I guarantee my future won't be how I planned it, but it will be full of determination and dedication to get a better quality of life that I've forever dreamed of for the most part of 6 years. I have huge ambitions. I dream of traveling the world! I want to WALK again! But first I need to survive and with your help I may be able to!!
"A successful person is a person that can build a firm foundation with the bricks that life has thrown at them"
SENDING CYBER HUGS & APPRECIATION IN ADVANCE!
With Love,
Chloe & The Brookes Family✨
Follow My Journey On Facebook
My Story On Stop Mandatory Vaccination
Awareness: Above is very informative documentary about uncovering the truth of the HPV vaccine; I feature in it! ‘Sacrificial Virgins’ was filmed during a brief but cherished period of stability in March 2017 after a year long stay at University College London Hospital, just two months before my abnormal eye movements and ability to obtain a conversation without consequences of relapses or multiple seizures got worse. By May I lost my speech completely! I also lost a ton of weight & my luscious locks, so it barely shows the true extent of my situation, but I guess it still gets the message across.
I also recommend watching...
‘Manufactured Crisis’ & ‘Voices of the Shadows’ for better understanding of what we (and thousands of other families) are going through.
These are available to watch on Vimeo free-of-charge.
Fundraising team: Team Help Chloe Live (3)
Chloe Leanne Brookes
Organizer
Tania Brookes
Team member
Tommy Brookes-Holder
Team member