Fighting to get our girl back

Our world has been turned upside down after our incredible Vickie developed Sepsis in October 2020. What started as a promising and ‘simple’ surgery to help continue to treat her ongoing conditions, has left her body fighting at every corner after critical treatment was delayed and she deteriorated into septic shock. Due to the severity of the damage this has caused, 7 months on she is still requiring around the clock care, a complex regime of over 40 medication doses via enteral syringe and I.M. injection per day, 24/7 tube feeding via a permanent gastrojejunostomy, and the majority of her days on complete bedrest; a heart-breaking comparison to the lively and independent woman she’d grown into having already overcome so much in her lifetime.

Despite her long and complex medical history, including a connective tissue disorder and a spinal cord contusion, Vickie has always had a smile on her face, inspiring those around her and spreading positivity everywhere she goes. Over the past few years Vickie has grown to embrace her disability, playing Wheelchair Basketball for Thames Valley Kings before branching into Para Ice Hockey, playing nationally for Cardiff Huskies and representing GB Women at the 2018 Women’s World Cup. In 2019, Vickie founded Liberate Dance, the UK’s first exclusive wheelchair dance company, going on to win the prestigious Rising Star Award from One Dance UK one year later. Vickie strived to be a positive role-model and advocate for wheelchair users and people living with disabilities across the country and around the world.

Above - Vickie and some of the Liberate Dancers in a local magazine article. Click here for more information - Liberate Dance

Below - Vickie's award win from One Dance U.K. in November 2020.

Sadly, her recovery over the past 7 months has led to 8 unexpected emergency surgeries and more time spent in hospital than at home, with two separate month-long admissions and countless blue lights into resus, tonic-clonic seizures, infections, recurrent sepsis, haemorrhages and internal bleeds. Each admission has led to more complications, tubes, medical devices, permanent line’s, and new diagnoses to come to terms with. In the space of a few short months, we’ve come frighteningly close to losing our precious girl on 4 separate occasions; all as a result of sepsis.

Consequently, as a sepsis survivor, Vickie has now been left with at least two extremely rare and life-threatening conditions, while further investigations are uncovering additional complex autoimmune diagnoses.

Hypoadrenalism

Late in 2020 and one month after her initial discharge from hospital, Vickie was not still recovering well. Upon needing further surgery, she crashed in the recovery room leading to extensive testing which revealed the severity of the sepsis infection had caused complete adrenal failure, with undetectable cortisol levels. Cortisol is an essential hormone needed for life and affects almost every organ and tissue in the human body. Among its vital tasks include helping the body respond to stress (everything from illness, shock, surprise, physical exertion and emotions etc), maintaining blood pressure and heart function, slowing the immune systems inflammatory response, regulating metabolism and the effects of insulin to produce energy, and maintaining a proper sense of wellbeing. Being diagnosed with Hypoadrenalism means Vickie’s body is no longer able to produce cortisol and she is missing this fundamental hormone. Hypoadrenalism, also known as Addison’s Disease and Adrenal Insufficiency, is extremely rare, with the majority of medical professionals never having heard of it, let alone treating a patient with it, and specialist Endocrinologists maybe meeting only one patient suffering the condition throughout their careers. Being so rare, under-funded and under-researched, the only treatment currently available on the NHS is artificial hormone replacement with Hydrocortisone steroid tablets. Vickie was started on this immediately, however we continued to watch her deteriorate for several weeks until she started having tonic-clonic seizures. It was discovered that due to one of Vickie’s ongoing conditions, Gastroparesis (causing paralysis of her stomach and malabsorption throughout her GI tract) these tablets weren’t having any effect. Despite increasingly high doses of these steroids, this treatment was unsuccessful, and she continued having adrenal crises. This is the terrifying consequence of hypoadrenalism when a person’s cortisol levels drop too low, and within minutes becomes a life-threatening emergency. We learnt the seizures she was having were due to her body shutting down and slipping into a coma. With little knowledge and awareness of this complex condition among her teams, we were left desperately searching for alternative treatment options to keep her out of hospital which we’ve been fortunate to find in Dr Bernard Khoo and Philip Yeoh at The London Clinic.

This private endocrinology team have been involved in breakthrough research into adrenal disease and treatment options to improve patient’s quality of life, by developing an alternative solution with the use of an insulin pump. By filling the pump with Hydrocortisone instead of Insulin, hypoadrenal patients can replace their cortisol hormones more consistently and reliably via a continual subcutaneous infusion through a cannula under the skin. Given Vickie’s inability to digest and absorb hydrocortisone tablets through her damaged GI tract, she has been loaned the pump from The London Clinic to trial this technology, which has been lifesaving. Unfortunately, while still being an experimental treatment with the pump technology being used off-licence, she is one of only 30 patients in the UK using the device in this way. The pump itself costs £3000, with consumables including cannulas, needles and infusion sets costing upwards of £200 per month. Given how unwell Vickie is with her ongoing recovery and several new autoimmune complications resulting from the sepsis, even with the pump her hypoadrenalism is proving difficult to keep stable, as each set of symptoms puts more and more stress on her body, requiring ever changing cortisol replacement doses. Because of this, Dr Khoo has been needing to monitor her very closely with regular appointments and repeated tests and MRI’s, and she will continue to need to pay for these ongoing private appointments and investigations for the foreseeable future, as well as the cost to purchase the pump and consumables. Vickie will now be steroid dependent on this pump for the rest of her life and will need to cover these ongoing costs indefinitely.

Secondary Hemophagocytic Lymphohistiocytosis, Macrophage Activation Syndrome, Mast Cell Disease & Mastocytic Enterocolitis

During a further surgery in January of this year due to internal bleeding, several biopsies of her organs were taken after the surgeons found damaged and ulcerated tissues throughout her GI tract. In early March these biopsies came back positive for excessively large quantities of mast cells, a type of white blood cell responsible for the immune systems inflammatory response, and she was diagnosed with Mastocytic Enterocolitis. These positive biopsies were unexplainable, and Haematology Consultants were immediately called to undertake an emergency bone marrow biopsy, with conditions like Systemic Mastocytosis and Leukaemia being put on the table. Samples were sent to London, Oxford, Southampton, Salisbury and Winchester and after another tough recovery from major abdominal surgery in March resulting in an unexpected emergency colostomy, due to the Mastocytic Enterocolitis, she was allowed home again to await these results.

It has been an agonising 6 weeks in limbo while continuing to watch Vickie decline as these cells wreak havoc on her body and organs, causing bone pain and lymph node swelling, internal bleeding, blistering skin reactions across her body, fevers multiple times a day and changes to her cognitive function resulting in frequent confusion, memory loss and difficulty in processing information. We have now received her full bone marrow biopsy report, which has ruled out our biggest fears of Leukaemia, however what it has shown has stumped her doctors. The report confirms an unknown type of Mast Cell Disease, and a diagnosis of Macrophage Activation Syndrome - a rare adult-onset type of Secondary Hemophagocytic Lymphohistiocytosis. Too many cells are being produced from her bone marrow in an inflamed and over-reactive state, essentially causing her body to be in a permanent state of “allergy” to itself, attacking her immune system directly from her bones. Vickie has never had an allergy, never even needing to take an antihistamine in her life, yet she is suddenly having these episodes up to 10 times per day, which now include sudden attacks of tachycardia (her heartrate jumping to 160bpm at rest), continual nose bleeds, and lip, face and tongue swelling; often with as little as a few minutes relief before the next episode starts. She is at constant risk of anaphylaxis, but so far, her doctors can’t explain why.

There are a handful of research papers showing positive evidence towards some off licence and experimental treatments, but of the 6 they have wanted to trial, two have been unavailable to source in the UK, one was started for 3 weeks until we were informed of supply shortages meaning treatment had to suddenly stop, and the others have made little difference to how this so far unidentified illness is progressing week by week. Due to waiting lists being exacerbated by the Covid-19 pandemic, she is still waiting on urgent NHS referrals to immunology at John Radcliff Hospital in Oxford to get further help, and her doctors have had no choice but to start her on high doses of immunosuppressive steroids to dampen her immune system and try to control the production of these cells until we gain clearer insight on the diagnosis and prognosis. With her teams admitting they’ve never seen anything like this before and not knowing how to control or treat it, we have been pointed in the direction of private Haematologists specialising in mast cell disease and stem cell transplants who have links to the latest research developments happening in Florida. Without taking matters into our own hands and going to private clinics in the hopes of finding a doctor who can understand what’s happening in Vickie’s body and offer treatments to control the damage it’s causing, we fear this will continue to deteriorate at the rapid rate in which its developed, leaving her organs with irreversible damage.

At this stage, with so much uncertainty surrounding treatment options and the prognosis, we are unable to estimate how much it’s going to cost to get Vickie better. With several recommended Doctors and research trials overseas, and Vickie bouncing in and out of hospital week after week, Lorraine has put all her time into contacting and arranging virtual appointments with these specialists while caring for Vickie full time at home, but we don’t know how long this can continue until bigger action needs to be taken. Anything you are able to donate will help so much and all the money raised through everyone’s incredibly generous fundraising efforts will go towards directly paying for Vickie’s ongoing medical costs.

We can’t thank you enough for taking the time to read Vickie’s story and the devastating effects the past 7 months has had on her life. With your help we hope to get our girl back to embracing life and thriving instead of just surviving through each day.

You can see photos and videos of Vickie’s life, achievements and the journey she’s been on via the following link: Vickie Simmonds

For more information about Vickie and a detailed account of her recent life story up to January of this year, her best friend Dan Worth has written about the effects of watching her go through this and what your help to get her back means to all the lives she has touched. You can read his story via the link below: Vickie's Story

"We will continue fighting for Vickie who has fought so hard for so long"

We’re incredibly touched that several of Vickie’s friends and family have taken on personal challenges and fundraisers for Vickie’s recovery and treatments. You can see what everyone’s up to and follow their journeys below:

Best friends Sophie Hunter, Jesamine Oldman, Milly Withers & Milly Clarke are walking ‘100 miles for Vickie’, hiking the entire Cotswold Way over 5 days in August. They’ve started their training, racking up miles and blisters, and we’re so proud of them and the love and support they’ve given Vickie during her illness. Vickie’s determined to be strong enough to join her girls for the final push over that finish line on 30th August where we’ll be cheering them all on. You can follow their training, find updates on Vickie’s health and see how the girls are raising awareness about the rare conditions Vickie’s now living with on their dedicated social media and JustGiving pages: FB:https://www.facebook.com/100milesforvickie IG:https://instagram.com/100milesforvickie JustGiving:https://www.justgiving.com/crowdfunding/100miles4vickie

Georgina Lofthouse is taking on the London Marathon in Vickie’s name! Vickie’s known Georgina since she was 9 and has been so inspired by the commitment and dedication Georgina’s put into her training over recent years. We’re all rooting for her and this incredible challenge shes taken on! You can follow her journey and updates here: https://www.justgiving.com/crowdfunding/londonmarathonforvickie

Vickie’s sister Sammy Perks along with her husband Matt are gearing up for the Cotswold Way Ultra Challenge - a whopping 100km in just two days! After finding out how much was being spent early on with the need to get private specialists involved in Vickie’s care, Sammy went to their parents telling them they’d like to do this for her and started their training - Go Sammy and Matt 💪🏼🥾

Vickie’s girls Amanda Watkinson & Lizzie Sawyer, together with the entire Liberate Dance family, are showing what an incredible community of support Liberate Dance is by rallying behind their girl with a phenomenal 12 hour Dance-a-thon. This event takes place on the 21st August and Vickie will hopefully be making a few appearances throughout the day so make sure you pop the date in your diary and join them for a dance 💃🏼🕺🏻Event:https://fb.me/e/13EdwJ8g5 FB:https://www.facebook.com/344708109546828/ JustGiving:https://www.justgiving.com/crowdfunding/12hrdanceathonforvickie

Fern Walters is braving heights and jumping out of an airplane to skydive for Vickie! Watch this space for updates and to wish her luck - we’d definitely rather her than us on this one..

Charlie Humphrys, a close friend of Vickie’s who’s also a spinal cord injury survivor and who incredibly had a similar major abdominal surgery a few months prior to her, is challenging himself to taking on an eye watering 350 pulls ups in 1 hour, lifting himself strapped into the weight of his wheelchair. Charlie is pure motivational goals, with a heart of gold and guns of steel, and the support these two have been able to give each other throughout their health journeys is what friendship is all about. You can follow and support his challenge here: https://www.justgiving.com/crowdfunding/charlie-humphrys

Finn Chambers, Molly Risker and Anna Duffelen are Personal Trainers at Nuffield Health Newbury, and this year decided to run the Hampshire Hoppit Trail Marathon for Vickie along with campaigning and raising awareness around the gym - we can’t wait to get Vickie stable enough to join them at Nuffield Health to start her rehabilitation and are so grateful of their support.

Vickie has so many truly wonderful people in her life and we are so grateful to them for taking on these fundraisers to help get her the treatments she needs ♥️