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,” she said.
“I can never wake up in the morning and think: ‘Yeah, I’ll be fine today’, because by midday, it might all go wholly the wrong way, and I’ll be in pain.My kidneys will hurt, and my catheter might stop draining.”
in November 2025, Caris was formally diagnosed with Fowler’s Syndrome. She remains on a waiting list for NHS treatment, which she has been on since April 2025, but was told she was unlikely to be contacted for an initial consultation until April 2026.
Desperate and no longer able to deal with the debilitating pain – and the impact it is having on her mental wellbeing – she and her parents are pursuing private care and are facing prohibitive fees.
“I don’t want to see her have to deal with her mental health as well as her physical health…” said her mum, Jill.
“It’s just heartbreaking.”
Jill has set up a GoFundMe fundraising page,where the target is set at £7,000,though she explained that the treatment will cost more than this.
After a first-stage consultation, a private urologist told Caris that she can try a sacral nerve stimulator (SNS) – a device that sends mild electrical impulses to nerves in the lower back which can definitely help improve control over bladder function.
There is, however, no guarantee that this would work.
“If it effectively works, then that’s fantastic. We are obviously trying to generate positive manifestation that it is going to be triumphant,” Jill said.
“But if there’s a chance that it isn’t,then he was quite clear with what the other option would be… We just don’t want to think about what the other option is. We don’t want to say it out loud.”
If the SNS is not successful, it is indeed likely that the only course of action is for Caris’s bladder to be removed and a permanent urostomy bag fitted, which will collect the urine that would or else have gone into the bladder.
To fundraise for Caris’s treatment, and to raise awareness of this little known condition, Jill is running five kilometres every day in 2026. When asked why, she replied: “Bake sales are not my thing!”
Jill has been running for 20 years,even taking Caris along in a pushchair when she was an infant,”but I’ve never run every single day in a year”.
The challenge is designed to shine a light on the physical and mental struggles Caris faces every single day, and she hopes that it will raise awareness of the silent, hidden battle Caris is fighting.
“Five kilometres is half-an-hour of my day.And compared to what she is going through in her day – she can