Bacteriophage Therapy to Cure Bee’s chronic UTIs
Donation protected
Hi, we are Angie and Todd and we are trying to raise vital funds for Bacteriophage Therapy to cure our seven year old daughter, Bee of a chronic embedded Urinary Tract Infection.
Chronic UTIs in children are extremely under-researched and the NHS’ approach to treatment, which we have been on the other end of for almost 5 years now, is reductive, ineffective and horribly damaging.
This short clip from the Houses of Parliament explains the issue better than our numerous attempts when writing this, please do watch!
The above clip is about the effects of chronic UTIs on grown women. Our daughter has been battling this now since the age of 2. Her young life has been so significantly marred by the effects of this relentless condition; it has wreaked havoc on her body and is causing our bright beautiful girl to feel hopeless and defeated. It leaves her in daily pain, often housebound and isolated from friends and the school she loves.
Her body has been a little powerhouse fighting endless infection but five years of antibiotic misuse has led to antibiotic resistance, which is incredibly risky in such a young child. We are forever on the look out for Sepsis, which is extremely common if the infection reaches the kidneys, and feel bulldozed with fear that every new year where she is still suffering brings her closer to a future facing permanent kidney damage and an increased risk of developing Squamous Cell Carcinoma - a less common type of bladder cancer associated with chronic UTI.
Bee typically gets an infection flare of the embedded bacteria every 2/3 weeks. It is not uncommon for her to have to take three different rounds of antibiotics in a row until an antibiotic is found that can squash the infection for another few weeks. If Bee is actually well enough to attend the school she loves it is normally a day spent masking painful cramps in her stomach from either the infection, a drug called hiprex she takes as a preventative with horrid side effects, or nausea and fatigue from finishing off yet another cycle of a heavy antibiotic. Add to this the stress of secretly navigating a dysfunctional pelvic floor and overactive bladder thanks to five years of infection and we are left with a shadow of the vibrant, creative and magnetic little girl that she is.
There is hope!
A couple of years ago we came across a therapy treatment that has been approved overseas but is still yet to be approved in the UK. We have been researching it since and believe it will cure Bee. Bacteriophage Therapy has an 80% chance of success at completely curing chronic UTIs. Even individuals who experience a UTI after the therapy have been able to quickly kill any new bacteria with the basic treatments used for a common UTI.
The treatment centre is in Tbilisi, Georgia and is typically ten days long, at £4-6000 depending on the complexity of Bee’s case. Further treatment can then be continued at home.
Unfortunately, five years of infection means we simultaneously have to treat Bee’s secondary health issues: biofeedback for pelvic floor dysfunction and over active bladder and functional medicine doctor to address gut microbiome damage from antibiotic misuse. For the latter we have been quoted £3500 with advanced testing for root cause of infection. Thankfully we are two years in to an NHS waitlist for Biofeedback that we are hoping will materialise this year.
Our daughter is a walking, talking, singing, dancing miracle kid. She put up an almighty fight to be here, surviving multiple pulmonary embolisms and thriving despite suffering brain damage from missed meconium inhalation at birth. She aced two years of physio from age 0-2 and skipped out of there with a bill of health way beyond anything her brain charts had predicted. We cannot let the life she fought so hard for be so tough.
We are deeply in your gratitude and any donations will help us tremendously to achieve our dream for Bee and give her the ‘normal’ childhood she so desperately wants. I know that this therapy will be life changing. Please consider reading the links to articles on phage therapy and the Phage centre Tbilisi, as it will explain far more than we can.
Bee is a daily blessing in our lives that we so nearly missed, we are asking for one last miracle to stop this bacteria where antibiotics can’t. xxxx Angie and Todd
Co-organizers (2)
Angelina Reilly-Szostak
Organizer
England
Todd Heppenstall
Co-organizer