Help Katie to never have to fight urosepsis again
Donation protected
Hi everyone, over the last 7 years our daughter Katie has fought a horrible genetic condition (Classical Ehlers-Danlos Syndrome), which has left her needing a surgical feeding tube, surgical catheter and a central line directly into her heart. Throughout all of this, Katie has been adamant she wants to continue living life to the fullest and we really want to help her.
However, in Dec 2019, she contracted a very rare type of bacteria in her bladder that was resistant to most antibiotics. Since then, she has had a UTI constantly. It’s coming up to 4 years of horrific infections for her. Sadly, as time has gone on, the options for antibiotics have become very limited and dangerous. Right now, there is only one single IV antibiotic that can be used to try and manage the infections. Her doctor calls this ‘the dettol’ of antibiotics because it strips your body and causes horrific side effects including: constant vomiting, bowel infections (C.Diff), intense migraines and pain in the bones. Katie just has to put up with this because otherwise she would become critically ill with sepsis.
The fact that there are very limited options for treating Katie’s dangerous infections means that she regularly develops a life threatening blood infection called sepsis. She has been admitted to hospital roughly once a month since 2021 and has been through some horrific experiences. Her liver is now very damaged and the antibiotics have wiped out her white blood cells (neutropenia), meaning she has a very impaired immune system.
However, we finally have a little light at the end of the tunnel. We saw a specialist in The Freeman, who told us the only way to manage the infections, increase Katie’s quality of life and increase her life expectancy is to have a surgery to remove her bladder (called cystectomy/urostomy). They will take the tubes draining urine out of the kidney and create a new route out of the body using a part of her intestines. She will then have a urostomy bag to collect the waste products.
Our biggest concern currently is that, although Katie is a priority patient, the NHS has incredibly long waiting lists since Covid. And with each septic infection, more and more organs become damaged and she becomes more unwell. We have spoken to an amazing private Urologist in London, who is willing to do the surgery in May if we can raise the funds in time. It’s important to have this surgery as soon as possible because it is a major surgery and Katie needs to be as healthy as she can be going in to it.
This surgery has the potential to not only extend Katie’s life but to also give her a MUCH better quality of life than spending months in side rooms in hospital. She would love to have the opportunity to finish her Speech and Language Therapy degree (which she completed 3 of the 4 years while being in and out of hospital). She dreams of being able to travel without the massive risks of becoming critically ill abroad. And would just love to experience ‘normal’ life as a person in their 20s.
We are very aware that this surgery costs an awful lot of money. We will be putting as much aside as we can afford as a family, but there are lots of hidden expenses by having the surgery in London. These include: the cost of accommodation while Katie is in hospital, travelling from Middlesbrough, medication costs, consultations with surgeons/anaesthetists/dietitians/physio etc, and the cost of an ICU bed after the surgery.
Over the years people have asked how they can help us and we are all incredibly grateful. If we are able to raise enough money to allow Katie to have this surgery, our whole lives would change. However, we are very aware that people are experiencing difficult times financially, so please don’t feel obliged to donate anything if you are struggling yourself- that is not what Katie would want. But if you feel able to share this page, we would all be extremely appreciative. And if you are able to give even a tiny donation, you would be helping us out massively! Thank you for reading this far!
However, in Dec 2019, she contracted a very rare type of bacteria in her bladder that was resistant to most antibiotics. Since then, she has had a UTI constantly. It’s coming up to 4 years of horrific infections for her. Sadly, as time has gone on, the options for antibiotics have become very limited and dangerous. Right now, there is only one single IV antibiotic that can be used to try and manage the infections. Her doctor calls this ‘the dettol’ of antibiotics because it strips your body and causes horrific side effects including: constant vomiting, bowel infections (C.Diff), intense migraines and pain in the bones. Katie just has to put up with this because otherwise she would become critically ill with sepsis.
The fact that there are very limited options for treating Katie’s dangerous infections means that she regularly develops a life threatening blood infection called sepsis. She has been admitted to hospital roughly once a month since 2021 and has been through some horrific experiences. Her liver is now very damaged and the antibiotics have wiped out her white blood cells (neutropenia), meaning she has a very impaired immune system.
However, we finally have a little light at the end of the tunnel. We saw a specialist in The Freeman, who told us the only way to manage the infections, increase Katie’s quality of life and increase her life expectancy is to have a surgery to remove her bladder (called cystectomy/urostomy). They will take the tubes draining urine out of the kidney and create a new route out of the body using a part of her intestines. She will then have a urostomy bag to collect the waste products.
Our biggest concern currently is that, although Katie is a priority patient, the NHS has incredibly long waiting lists since Covid. And with each septic infection, more and more organs become damaged and she becomes more unwell. We have spoken to an amazing private Urologist in London, who is willing to do the surgery in May if we can raise the funds in time. It’s important to have this surgery as soon as possible because it is a major surgery and Katie needs to be as healthy as she can be going in to it.
This surgery has the potential to not only extend Katie’s life but to also give her a MUCH better quality of life than spending months in side rooms in hospital. She would love to have the opportunity to finish her Speech and Language Therapy degree (which she completed 3 of the 4 years while being in and out of hospital). She dreams of being able to travel without the massive risks of becoming critically ill abroad. And would just love to experience ‘normal’ life as a person in their 20s.
We are very aware that this surgery costs an awful lot of money. We will be putting as much aside as we can afford as a family, but there are lots of hidden expenses by having the surgery in London. These include: the cost of accommodation while Katie is in hospital, travelling from Middlesbrough, medication costs, consultations with surgeons/anaesthetists/dietitians/physio etc, and the cost of an ICU bed after the surgery.
Over the years people have asked how they can help us and we are all incredibly grateful. If we are able to raise enough money to allow Katie to have this surgery, our whole lives would change. However, we are very aware that people are experiencing difficult times financially, so please don’t feel obliged to donate anything if you are struggling yourself- that is not what Katie would want. But if you feel able to share this page, we would all be extremely appreciative. And if you are able to give even a tiny donation, you would be helping us out massively! Thank you for reading this far!
Fundraising team: Team fundraiser (5)
Katie Bennett-Hogg
Organizer
Madeleine Bennett
Team member
Mark Hogg
Team member
Jacob Bennett-Hogg
Team member
Hannah Bennett-Hogg
Team member
