Hello, I’m the mum of little Helena, who’s two years old, and we’ve been through a lot together. She was born on 11 September 2022 with a rare condition called bladder exstrophy. (Her abdominal wall was open, her bladder was protruding, and her hip wasn’t in the socket) as it should be.

I spend a lot of time in hospital with her, and it’s hard to get a normal life going because we’re constantly being thrown for a loop and have to start all over again due to hospital stays that come up at short notice. At the moment, she has a granuloma causing fluid to leak out of her abdominal cavity. It remains to be seen whether this is a result of the fixation surgery. The 17th general anaesthetic took place in April. Regardless of this, in cases of congenital bladder atresia-epispadias complex, urinary incontinence persists in most cases even after surgical correction, due to an insufficient bladder neck sphincter mechanism. This necessitates the wearing of nappies even into school age or beyond. Often, continence is only achieved through the creation of a catheterisable stoma, with or without bladder augmentation and bladder neck plasty.

So she still has a lot ahead of her, and I want to devote a great deal of thought and energy to being there for her. Unfortunately, I cannot treat her to a break somewhere for a special experience, as I cannot afford it financially; I don’t even have a car with which to drive to the hospital car park.

I am grateful for any help with my little Helena. Every penny goes towards giving her a good life despite her illness.

Warm regards from both of us ❤️