A FAMILY has launched a desperate £80,000 fundraiser plea for lifesaving after their daughter has been left bedridden by a slew of diseases.
Lizzie Heale was only a newborn when she was diagnosed with Ehlers-Danlos syndrome (EDS) – a rare group of conditions that affect the connected tissue of organs, muscles and bones.
The 23-year-old then suffered from bladder failure in 2020 which resulted in a host of illnesses such as chronic kidney disease, chronic pyelonephritis, vesicoureteral renal reflux and kidney scarring.
As a result of this, Lizzie, from Torquay, Devon now requires a wheelchair, a catheter and constant antibiotics as she sits on a three-year waiting list for surgical treatment.
With surgery proving urgent, the family have now turned to private treatment before the infections become too severe, setting up a GoFundMe last Friday (18 AUG) to help pay for the medical costs.
Lizzie wrote in the description: “I was born with Ehlers-Danlos syndrome; a rare genetic multi systematic, organ-involved connective tissue disorder that causes faulty collagen.
“Symptoms and illnesses [have] developed as a result of the Ehlers-Danlos syndrome itself. It’s ultimately an illness that causes other illnesses.
“EDS is a spectrum. Unfortunately, I am on the severe end of that scale. And over the span of my life, I have developed multiple rare, life-changing and life-threatening conditions.
“I have many other illnesses and symptoms, one of them being severe issues with my entire urinary tract and system.
“In my urinary tract, I suffer with detrusor failure, chronic kidney disease, chronic pyelonephritis, vesicoureteral renal reflux, scarring on my right kidney, severe bladder pain yet at the same time I have no sensation either.
“I am laying here at 23 with a surgical tube; a suprapubic catheter, jutting out of my stomach to drain the chronically infected urine from my failed bladder.
“After three years of living with these severe problems, we are now in the dangerous position of being on constant antibiotic treatment to attack my chronic pyelonephritis, which is essentially the combination of kidney disease and persistent kidney infections.
“I desperately need major surgery to not only save my life but to improve the quality of life massively too.
“I need a cystectomy, a urostomy, stents placed in my right kidney and to create a completely new route and passageway, made out of a small part of my intestines to make a new passageway, and then a stoma for my urine to drain on the outside of my body, into a bag.
“I currently have a suprapubic catheter, a surgical tube inserted through my stomach and into my bladder. This is only adding to the severity of my infections. These infections will end up killing me.
“I’m becoming resistant to antibiotics that are sensitive to the rare bacteria I continue to grow in my kidneys, bladder and SPC tube site, which is extremely dangerous.
“I am stuck in a hospital bed all day, every day. I am so severely ill that I can’t leave the house unless it’s for appointments. I am in a wheelchair. And I am currently the sickest I have ever been.
“This major surgery certainly isn’t cheap. £70.000! Something that we cannot afford and now I’m in such a dangerous position, we desperately need help.
“I want to live and to live a life where I’m no longer in severe pain, and the life-threatening infections are stopped which simply cannot be done anytime soon through the NHS.”
Lizzie’s mother Simone added: “As a mum, all I want for my daughter is to live her life to the full. At present, Lizzie is in a hospital bed in the lounge.
“When she does leave the house, it’s in a wheelchair. She is in constant pain. This surgery would be life-changing and therefore, lifesaving.
“The more infections she has the weaker she becomes and her body becomes resistant to antibiotics.
“Sepsis is always a major worry too. Anything you can give to help Lizzie get this surgery, would be incredible.”
Many were quick to share their support for the family.
Laura Day wrote: “I feel you. I have EDS more on the JHM side and it sucks. Every other week is a new symptom and another dislocation. Keep pushing, hun.”
Kevin Holland said: “Lizzie is the daughter of a very dear friend. No one should have to face this at any age, let alone a young woman like Lizzie.
“If you can, please do donate to help her get the medical care she desperately needs.”
Rachel Harwood commented: “Done. Terribly sad what this poor girl is going through.”
Kate and Daymo Chapman added: “Fingers crossed for you all.”
At the time of writing, the fundraiser has received £2,725 – to donate, you can visit this link: https://gofund.me/fb309476
