*This Fundraiser began in 2017 & is ongoing*
Our Goal: To fund ongoing complex care and the specialist support Chloe desperately needs to help her live a better quality of life.
All funds raised over the past 7 years has been used for:
- Medical Equipment & Support
- Pain & Symptom Management
- Specialist Input & Investigations
- Medical Interventions
Specifically to help manage, stabilise or treat the following conditions:
- Severe Myalgic Encephalomyelitis
- Dysautonomia / POTS
- Mast Cell Activation Syndrome (MCAS)
- Gastroparesis
- Adrenal Disorder(s)
- Interstitial Cystitis, Chronic UTI
- Nutritional Deficiencies
*Please scroll to the bottom to see a more detailed breakdown & the estimated costs.*
- The outcome so far:
We’ve faced major challenges – health complications, legal prescribing barriers, and the difficulty of accessing advanced treatments like IVIG and Stem Cell Therapy. This is due to a combination of factors: Chloe’s fragile health makes travel and hospital stays unsafe, NHS limitations mean some treatments aren’t available or approved for her conditions, and international restrictions prevent certain therapies from being brought into the UK. On top of this, her severe immune reactions make even routine infusions potentially dangerous without the right specialists.
Furthermore, we’ve been managing one crisis after another while meeting Chloe’s ongoing daily care needs.
- Where we stand now:
The immediate goal is seeking private endocrinology care. This is essential to address adrenal insufficiency and hormone imbalance, helping Chloe stabilise physically and gain enough strength to safely consider other interventions — such as recommencing IVIG — if recommended by her specialist(s).
Stem Cell Therapy remains a long-term hope for the future. It is not an immediate focus, but it continues to be a part of our vision of eventual healing once Chloe is strong enough.
It’s been a long journey, but we haven’t given up — your support has been invaluable. You’ve helped us keep Chloe alive and we believe each step forward brings us closer to us getting her quality of life back!
An Introduction From Who You’re Fundraising For…
Hello. My name is Chloe Leanne. I was 19 when we started this fundraiser. I am now 27 years old and [ever so reluctantly] continuing to accept strangers’ generous gestures of any kind to assist in relieving my family’s financial burden while we fight to relieve my feisty physical one.
I was once a dancer, artist, major foodie and aspiring wanderlust with a passion for fashion and love of learning. I had my entire life mapped out in front of me and felt my future within my grasp. Then my life changed forever.
I’ve been sick for over half of my life. For 15 years I’ve battled an unwanted bundle of debilitating chronic illnesses that began to develop after my HPV vaccines (Cervarix). I was yet to connect the dots and witnessed further decline after a DTaP booster, [which I thought was another HPV jab] that I couldn’t have at school due to suspected Glandular Fever. Yet the doctor still authorised it to be administered at the GP surgery.
Consequently, my immune system went into overdrive. I have since endured reoccurring infections and never ending symptoms that has led to the several diagnoses I have accumulated over the years. See list below.
The only ‘treatment’ I was given throughout my adolescence was CBT/GET (a behavioural talk and exercise based therapy since removed from NICE guidelines in 2021) which left me wheelchair then quickly bedbound.
It’s been a constant battle to be taken seriously and access the most basic health care.
I’ve endured relentless gaslighting, NHS neglect and medical mistakes that have not only caused profound suffering and deterioration, but near death experiences.
Despite my illness’s obvious progression I was passed from pillar to post and even abandoned in no-man’s-land while transitioning to adult care. Genuine diagnosis’s were either ignored or labelled psychosomatic.
Six years into it all a yellow card report was filed and the association between vaccine injury and chronic illness onset was on paper, documented in my notes. We thought that this would equate to better care, but we couldn’t have been more wrong…
My local services kept dragging me down the ‘Medically Unexplained Symptoms’ (MUS) route. And even went as far as accusing my family of Fabricated or Induced Illness (FII) aka Münchausen's by proxy.
Long story short, in August 2018 I endured a hospital stay from hell where all biological intervention — my feed, central line, IV fluids & medication — was removed against my will. Despite being unable to physically swallow or digest food for two years, their intention seemed to be an attempt to scare me into eating and so that they could transfer me to a psych ward at a hospital 50 miles away from home with no medical staff. I narrowly escaped this medical kidnapping by the luck of a doctor walking into the wrong side room and noticing that I was about to die an inhumane death due to malpractice. He was my angel. He overrode my care, replaced my central line, gave me the treatment needed to reverse kidney damage, electrolyte imbalance and hypoglycaemia, and got me home on a supported discharge - so that nobody could accuse me of being incapacitated or a danger to myself. Something I had to prove time and time again.
As a result of this traumatic ordeal, instead of receiving an apology from those responsible, I was removed from palliative care and my GP’s register. While they tried to erase the harm they caused I was literally left for dead until I managed to fund private doctors, had tests to reveal the extent of PHYSICAL damage they overlooked, and made small but life sustaining improvements with the yet to be NHS approved or funded treatments.
My Diagnoses & Their Impact
Myalgic Encephalomyelitis:
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 and rarely recover. ME can be triggered by infections and inoculations and causes: muscle pain, muscle weakness, paralysis, heavy limbs, headaches, flu-like symptoms, profound exhaustion known as chronic fatigue, brain fog and unrestored sleep.
Severe M.E. has rendered me bound to my bed, unable to walk, sometimes talk, sensitive to touch (hyperesthesia), smells (hyperosmia), light (photosensitivity), noise (hyperacusis), experiencing pulsating tinnitus, periods of insomnia or hypersomnia with no in-between… I also endure Post-Exertional Malaise - the hallmark symptom - for pushing my body with a poor energy metabolism 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 ME and needs to be considered in the individuals ‘activity quota’; which 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.
Fibromyalgia: chronic pain, musculoskeletal inflammation, central sensitisation, hypersensitivity & pain trigger points. unpleasant “voodoo doll” sensations as a result of over active nerve endings.
Scheuermann's Disease: (also known as Juvenile Osteochondrosis of the spine) is a skeletal disorder that causes irregular vertebral growth.
I have dehydrated & herniated disks + mild curvature of my spine. The cause is unknown. Mine could be due to a back injury in adolescence [through dance or from a few falls I’ve had] with internal dehydration, lack of muscular stability and poor cartilage cushioning caused by other conditions; making it more prominent & problematic now.
- {Diagnosis made by a private orthopaedic consultant from NHS MRI}
Dysautonomia/POTS — a condition that effects multiple functions of the ANS (heart, bladder, brain & blood vessels) as a result of autonomic dysfunction Postural Orthostatic Tachycardia Syndrome causes me: chest pain, palpitations, inability to tolerate changes in temperature/weather, excessive sweating, dizziness, vision problems, vertigo, syncope (fainting), tachycardia (high heart rates) and low blood pressure. This may trigger convulsive syncope.
- {Diagnosis made by a private cardiology consultant}
Fowler's Syndrome: Bladder dysmotility, Interstitial Cystitis, pelvic pain & urinary retention. I need to self catheterise up to 12x a day.
Gastropareisis: is a condition which causes the stomach to paralyse, and in severe cases paralysis of the entire GI tract. Symptoms include; reflux, nausea, vomiting, malabsorption, malnutrition, weight loss, poor appetite, delayed gastric emptying, severe constipation and abdominal pains.
I have a paralysed stomach and delayed motility of my GI tract. I’m in agony when meds, feed and water is being pushed down or pumped into my feeding tube.
Mast Cell Activation Syndrome (MCAS): Too much histamine releases in the body causing mast cells to explode (degranulate) and cause chemical reactions that result in an auto-inflammatory multi-systemic response. I’m literally “allergic to life”- at my worst I was even reacting to my own tears and water! I endure severe anaphylactoid reactions which floods my lungs with secretions and results in swelling (oedema) and rashes / hives (urticaria). Nobody can cook / clean / eat or breathe in our house without thinking of the implications it would have on me first.
I have Intolerance to anything high in histamine, 100’s of IgG food & non-food allergies: Multiple Chemical Sensitivity and am now prone to paradoxical reactions to drugs.
It is likely that I am genetically predisposed to vaccine and pharmaceutical adverse reactions.
- {Diagnosis made by a private Immunology consultant / Allergist}
Eoinisophillic Colitis: a rare type of Inflammatory Bowel Disease (IBD) which is linked to MCAS and associated with my dietary intolerances [e.g. fibre, lactose and multiple histamine releasing supplements & antibiotics.]
(Non-epileptic) Seizures: Triggered by overstimulation / noise / light / pain / acute illness. Misdiagnosed as psychogenic. ButBegan to decrease significantly with HRT and reduction in prolactin levels after my pituitary gland was 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 Addison’s-like Disease (hypocortisolism and inadequate secretions of hormones by the adrenal cortex).
- {Private Home-to-lab test results prompted NHS tests.}
This discovery is presumed to be associated with my Severe ME rather than a separate diagnosis but we’re yet to rule out endocrine-secreting or pituitary tumours.
Hyperthyroidism/Thyroiditis- thought to be secondary to Sepsis a potentially fatal reaction to infection, which I have fought eight times. In remission.
Chronic Hypokalemia- potassium deficiency. Contributed to full body tightness, Periodic paralysis and uncontrollable movements.
Hormone deficiencies; Possible Ovarian Insufficiency, due to alarming sex hormone levels on private tests and a menstrual cycle that no longer exists.
Many women are infertile or in irreversible ‘premature menopause’ curtesy to the content of Cervarix or ‘new and improved’ Gardasil. The fact that some have developed the cervical cancer this vaccine is said to prevent haunts me.
Others include: Anaemia, Nutritional Deficiencies, Metal Allergy & Toxicity,
Mold Intolerance, Chronic UTI,
Kidney & Bladder Stones.
Query Ehlers-Danlos Syndrome (EDS): a connective tissue disorder that could be the underlying factor to all the above.
... and much, much more that is still unknown or in the process of being diagnosed.
My Current Situation & Outlook
I have lived the past decade horizontally, bound to my bed 100% of the time, in a darkened room and isolated from what I’ve dubbed the ‘outside world.’ Only trading my 4 walls for the hospitals if an emergency arrises.
For over 8 years I’ve been hooked up to and dependant on multiple machines and medical devices to keep me clinically stable and ultimately alive.
What people don’t realise is that my ‘clinically stable’ can feel like a living death. I can feel as unwell as people do during a medical emergency or at end of life, but on a daily basis.
I’m at risk of aspiration because I lost the ability to vomit normally- I ended up in respiratory arrest when it first occurred, in October 2016.
I’m susceptible to infections and prone to Sepsis which resulted in shock, non existent platelets, near multi organ failure and a medically induced coma for 6 days in August 2023. I aspirated black bile while awaiting treatment which took 12 hours from ambulance call.
Being fully reliant on others physically and financially is a tough pill to swallow, but I’m blessed to have my mum, who has sacrificed so much for me, as my 24/7 carer. I wouldn’t be here without her, but I don’t know how much longer we can carry on like this. There’s no respite.
I’m also grateful to now have an incredibly supportive General Practitioner, but there’s only so much he can do within the broken system I have most definitely fallen through the cracks of.
Due to a complication with my J tube, I have been left with a bile gushing enterocutaneous fistula. It is so severe it has the potential to render anyone bedridden without the chronic illness on top. I require a stoma bag to collect bowel content and had to begin Total Parenteral Nutrition: a type of intravenous feeding, in November 2021.
I’m currently connected to TPN for 18 hours a day and it provides me with all the necessary nutrients directly into my bloodstream. In addition to that, to meet my 24 hour quota we have to run 1L of IV fluids simultaneously and during my break.
I’ve been told I may never be able to eat again. Unfortunately the only meds offered by the NHS which were effective for my intestinal dysmotility gave me rare and dangerous side effects i.e. A stroke-like response to metoclopramide and acute convulsions triggered by domperidone. However, my private specialist is confident that in time, with the right treatment protocol and the advancement of technology, I may regain some level of GI function in years to come. Same for bladder function and better control over my ANS. Thus, if I can fund private treatments long term I may not be this sick or reliant on the last resort interventions I’m currently on, for life.
Being symptom free is a lot to ask, but I'd do anything to have a ‘healthier sick’ life… where I can look a little into the future and see more than just an existence.
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 online advocates finally persuaded me that I am worthy of support and I deserve the chance to live just as much as anyone else.
✨| Ways Your Financial Contributions Will Help |✨
General Medical Costs
The initial goal in 2017 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, and this was put on hold while more urgent medical priorities were addressed.
Pain & Symptom Management Costs
- Water soluble CBD Oil & Topical CBD Balm (was purchased until I became intolerant in 2019.)
- Reiki, an alternative therapy that helps dull my pain, aid sleep and manage my emotions. £55 per at home session.
- Oxygen concentrators (x2) £900-£1200
- Braces / splints to support or realign joints and limbs when advised.
- Stoma & wound care (colloidal silver solution & gel, preservative-free aloe vera) approx. £55 every 6 weeks.
- UVB Lamp for Vit D deficiency.
- tVNS machine.
- Nebuliser.
Specific Medical Costs
Specialist input from doctors who specialise in conditions like mine; including those that acknowledge vaccine adverse reactions.
- Home appointments (£500) and full health reviews from Harley Street immunologists and ME specialists [with combined experience of 45 years], as well as emergency phone / zoom consultations. (£250)
- Multiple private prescriptions. £100 + drug costs.
- Private ambulances (for when attending a private outpatient appointment and was denied NHS paramedic transport to planned admissions 2017-2019.) £300
The most immediate goal now is receiving care from an endocrinologist, as this could help address adrenal insufficiency, hormone imbalance and possible premature menopause — issues the NHS has not yet provided help for.
Diagnostic & Investigative Tests
- Urgent at home ultrasounds. £400 x2
- Mastocytosis mutation and a full panel of antibodies for IVIG consideration.
- Adrenergic & Muscarinic receptor antibodies. Private phlebotomy, specialist courier to Germany, and clinic/lab charges (approx. £1,500 in total).
Yet to have
Genetic testing (specific genes such as MTHFR and COMT, EDS subtypes).
Health Tracking & Monitoring
- Viatom CheckMe O2 device. (£149)
- Blood pressure machine.
- Glucose monitor.
- Home-to-lab blood tests (e.g. cortisol & full hormone panels not available via GP) £49-£199
- Bioresonance/Asyra testing for allergies & intolerances, digestive health, nutrition/vitamin/mineral status. Sometimes available via voucher schemes at significant discounts (£19–£39).
Medical Interventions
- Additional IV fluids + KCl (potassium) vials. It took the NHS from 2019-2023 to provide the necessary amount of potassium I required to function.
- Hormone replacement therapy.
The NHS funds 1/3 of my private hydrocortisone dose.
- IVIG (intravenous immunoglobulin) £1750 per cycle every fortnight for 6 months - 3 years. Unfortunately I only managed 3 cycles in 2017/18 before I was forced to stop.
Yet to try:
- IV anti-virals
- Low-dose allergy immunotherapy (desensitisation protocol)
Longer-Term Hope
Stem Cell Therapy (approx. £140,000) was once my main treatment goal. At present, it is not an immediate focus — my body is not strong enough to travel abroad safely or without immense suffering and the US doctor is not allowed to fly the stem cells into the U.K. Therefore, SCT remains a distant dream for the future, when my health is stronger and the risks are lower. It is not where donations are currently directed, but it is something we continue to hold onto hope for.
More recently, Clinic Bel Etage, in Düsseldorf is place I’ve been made aware of for their conventional and alternative medicine approach. E.g. Diagnostic scans & any surgery required for vascular compressions, heavy metal testing & detoxification, Apheresis (blood cleaning), Supportive Oligonucleotide Therapy (SOT) for chronic infections/viruses & more. If only there was some place like this in England.
Our current priority is attempting to stabilise and treat my immune and endocrine issues. Only after this can further interventions like IVIG be reconsidered or other avenues explored. Getting a wheelchair would be next on the agenda.
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 to gain a better quality of life that I have dreamt of for what feels like an eternity.
I truly believe I am yet to for-fill my purpose on earth and given the opportunity I would love to prove those that believe I’m nothing but ‘a burden to society’, wrong.
“I wake up everyday to tackle the torturer because I believe I deserve to win this war.”
My mind is there, it will just be up to the funds and my body to decide how far it will be able to go.
I have huge ambitions. Being in nature again, returning to art & crafts! I want to SWIM & WALK & DANCE! Visit my family for the first time in Australia! But first I need to survive this storm and must re-learn to do basic things that with your help I may be able to achieve!!
Here’s to making my big family reunions, meet-ups with old friends and hugging my loved ones [without any major health implications] a reality!
With LOVE, GRATITUDE & APPRECIATION!
Chloe & The Brookes Family✨
Follow My Journey On Facebook
My Story On Stop Mandatory Vaccination
I also recommend watching...
‘Voices from the Shadows’ - Poignant M.E. documentary to help people better understand what we (and thousands of other families) are going through. Available to watch on Vimeo free-of-charge with code VOICES.
‘Sacrificial Virgins’ is very informative 3-part documentary about uncovering the truth of the HPV vaccine; I feature in part 2 - Pain & Suffering!
It was filmed during a brief but cherished period 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 2017 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 it still gets the message across.
‘Manufactured Crisis’ Educational Film about HPV Vaccine dangers, featuring industry professionals & patient testimonies.
Organizer


Chloe Brookes
Organizer
England