Please Help Milly Access Lifesaving Treatment

Please Help Milly Access Lifesaving Treatment For A Multidrug-Resistant Chronic Infection

 

For those of you who know and love Milly, you will know her as someone who gives selflessly to others.

 

As a daughter, she cared for her mother, who had early-onset dementia for 17 years.

 

As a wife, she is loving, compassionate, giving and caring.

 

As a friend, she is loyal and always there for others.

 

For the last 12 years, she has dedicated herself to working for charities, in hospices, care homes and schools supporting the vulnerable and disabled.

 

Now Milly desperately needs help herself; please give back to someone so caring who has given so much to help others.

 

Since the Covid-19 pandemic, Milly’s health drastically declined. Milly’s immune system was severely compromised after contracting Long Covid whilst working with the most vulnerable in society within the mental health sector. With a weakened immune system, other infections were allowed to take hold.

 

From November 2020, Milly has been suffering from a Chronic Urinary Tract Infection, spreading to her kidneys multiple times, resulting in renal impairment and life-threatening Sepsis. The only available treatment in the UK for this condition is long term high dose antibiotics therapy. Tragically whilst undergoing this treatment, Milly suffered many severe adverse neurological reactions to the medication, including neuro-toxic responses. Milly is left with no alternative but to seek vital lifesaving treatment in Europe.

 

Please Help To Save Milly’s Life

 

This is her story…

 

In November 2020, five days before Milly’s wedding, she developed a debilitating Urinary Tract Infection that was unresponsive to antibiotics and became chronic. Following repeated admittances to A&E, consultations with GP’s and specialists, Milly’s first urologist misdiagnosed her with Interstitial Cystitis/Painful Bladder Syndrome. This condition presents similarly to a Chronic UTI but with a negative urine culture. Milly pleaded with the urologist that she must have a UTI, as she knew the symptoms and believed the testing must be wrong. Milly was met with a sexist and dismissive attitude and was told it is an incurable condition and to manage her pain. Milly was offered archaic procedures that often leave women in more significant pain, such as bladder stretching, which does not treat the infection and often worsens it.

 

Unbeknown to Milly, the standard UTI testing is only 30% accurate, and she did in fact have a raging infection. This medical blind spot and failures in the testing have been revealed in recent media, as a UTI epidemic sweeps the nation, leaving women misdiagnosed and in agony. News reports can be read below:

 

ITV

https://www.itv.com/news/central/2021-12-15/the-treatment-is-failing-people-calls-for-better-diagnosis-of-utis

 

inews

https://inews.co.uk/news/chronic-uti-crisis-treament-diagnosis-symptoms-failures-women-pain-years-1231089

 

Milly was left with nothing but the highest dose of morphine, that of a palliative care patient, to manage the pain of her chronic infection, which is held comparable to stage 5 Kidney Cancer. This pain medication triggered an immune response, an Anaphylaxis reaction resulting in Angioedema (swelling of the windpipe and breathing difficulties) and Chronic Urticaria (Hives). Subsequently, Milly was diagnosed with Mast Cell Activation Syndrome (MCAS), which led to further complications and medical intervention and limited her pain management options.

 

This illness erodes quality of life and has impacted every aspect of Milly’s life. The daily agony of Milly’s existence has left her bed-bound, unable to work, forced to leave her dream job as a Music Therapist, which she had worked so hard to achieve and unable to fulfil her dream of having a family. Additionally, Milly’s mental health has been severely impacted, living in constant fear and threats on her mortality due to the daily risk of life-threatening Sepsis.

 

Milly Went From The “Bride who has it all” To “Living in hell, in a body of pain”.

 

It took five months for Milly to be diagnosed with a Chronic UTI finally. During those five months without treatment, the superbug embedded and colonised into every area of her bladder, making it incredibly difficult to treat. Milly was finally prescribed long term high dose antibiotics by the UK’s leading Chronic UTI specialist.

 

The Treatment That Was Meant To Save Milly’s Life Nearly Killed Her

 

Initially unresponsive, Milly was prescribed a stronger antibiotic which tragically led to a severe neuro-toxic reaction. Milly’s brain and central nervous system were responding in a way that she had been poisoned. Milly was rushed to hospital by ambulance and spent a significant amount of time in the acute ward of Birmingham Hospital, fighting for her life in a drug-induced hypoglycaemic coma. This toxic response left her with brain inflammation, in a wheelchair, unable to walk or use her hands, 70% loss of her vision, a heart arrhythmia, severe gastroenteritis, dehydration and widespread tendon damage.

 

After being discharged from the hospital, Milly spent the next two months in a dark room, fighting for each breath, severely traumatised and in agonising pain, being cared for by her husband and father.

 

The toxicologist could not determine whether Milly would ever fully recover; she was warned those who have these rare reactions to Fluoroquinolone antibiotics are often left with permanent and disabling side effects. But Milly made a miraculous recovery. Milly relearned how to walk independently and regained the use of her hands as her nerves and tendons healed. As her vision improved, her blurred world full of hallucinations stabilised and Milly could track objects with her eyes again. Her recovery was a shock to the team of clinicians overseeing Milly. But unfortunately, Milly’s heart was left permanently damaged, and her chronic infection was worse than ever.

 

By November 2021, Milly’s urologist restarted antibiotic therapy. Heartbreakingly after three months and showing some signs of improvement, Milly suffered another neurological reaction resulting in Peripheral Neuropathy (severe nerve damage) in her hands, arms and feet. These debilitating symptoms of constant burning, sensory pain and a loss of fine and gross motor skills mean Milly is now unable to play instruments, which has devastated her as she has been a talented musician since a child.

Milly's story has been picked up by the press nationally and internationally. As difficult and exposing as it was, Milly hopes in speaking out to the press, more awareness of this condition can lead to accurate testing and changes in how patients are treated and understood by the medical profession.

You can read the stories here:

https://www.the-sun.com/health/4690197/couldnt-have-sex-suicidal-doctors-medically-gas-lit-me/

https://www.dailymail.co.uk/femail/article-10514385/Newlywed-unable-sex-UTI-doctors-said-STI.html

https://nypost.com/2022/02/15/womans-uti-led-to-chronic-illness-after-she-claims-doctors-gaslit-her-and-ignored-her-concerns/


As advised by Milly’s team of clinicians (Urologists, Infectious Disease doctor, Cardiologist, Neurologist and Toxicologist), Milly is unable to take further antibiotics, leaving her incredibly vulnerable to fatal Sepsis.

 

"Suicide and Sepsis are the biggest killers for people with this condition" Bladder Health UK

 

In the US alone, 23,000 people a year die of multidrug-resistant infections solely, which does not consider that many people commit suicide, unable to live with the condition.

 

"More people will die from antibiotic-resistant infections in 2050 than currently die of Cancer" The World Health Organisation (WHO)

 

There is no further treatment in the UK that is not antibiotic centred, and with the guidance of her medical team, Milly is forced to seek an alternative and expensive treatment in Europe to save her life. This treatment is called Phage Therapy.

 

What Is Phage Therapy?

 

 

Click here to find out more about Phage Therapy

 

When Milly recovers, all she wishes is to return to work and help others again. She plans to not only return to the field of Music Therapy but wants to dedicate her life to raising awareness for individuals suffering from life-threatening chronic infections and become a Phage advocate.

 

Please share this with as many people as possible, through social media platforms, anyone with contacts in the media, or any other avenues that can raise awareness and contribute to the fundraising. We have flyers signposting to this page if anyone can post on noticeboards in their offices (don't hesitate to contact Alexis Wreathall or Milly Herner, and we will send them to you). Any music or sporty friends, please help fundraise and raise awareness of this page by doing a sporty challenge or putting on a gig, we are open and appreciate any ideas. Anyone who doesn’t know Milly personally but supports her fundraising, please befriend Milly on Facebook (Milly Herner), and Alexis will keep you all updated on Milly’s healing journey. Hopefully, Milly will be able to post updates herself when she is in treatment and getting some relief.

 

From the bottom of our hearts, thank you so much for your support, for spreading awareness, and any contribution you can make is so greatly appreciated. No amount is too small, and all works towards Milly accessing the lifesaving treatment she desperately needs.

 

Please help Milly achieve her goal of raising £30,000

 

In gratitude, Alexis and Milly xx