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The only gift for an 11-year-old girl wants to be her birthday is "to die", as an incurable condition
Imarni Chowdhury is being sedated with heavy doses of painkillers at Diana, Princess of Wales Hospital in Grimsby, Lincolnshire.
BPM Media
She has interstitial cystitis, a chronic inflammation of the bladder wall, which can cause scarring or pinpoint bleeding of the wall, and decrease space to contain urine.
According to the NHS, the condition affects people in their 30s and 40s, and is more common in women than men. It is rarely seen in children.
Imarni's distraught dad, Rahman Chowdhury, "broke down" telling Grimsby about his daughter's distressing situation – which has been compounded by the fact that he has had two years of suffering.
Although there is no such thing as a freezing gel, Sheffield and Nottingham hospitals have told Grimsby that they need to get it licensed.
When I asked her, she said she just wanted to die.
Imarni's dad, Rahman Chowdhury
In the meantime, poor Imarni continues to suffer, despite having a tube fitted into his stomach so he is collected in a bag – rather than sitting in his inflamed bladder.
Rahman said she did not enjoy a childhood, and that "people have no idea the extent of the bread. It is like having third degree burns or stage four cancer.
"When I ask her what she wants for her birthday next week, she said she just wants to die."
The part-time chef said that Imarni has missed a lot of school because she is "too poorly".
Imarni also has epilepsy and narcolepsy [sleep disorder].
"NEEDS HER DIGNITY"
Rahman has been in touch with the NHS, which has been given special attention by the primary carer, which in the family's case is Grimsby Hospital.
Unfortunately, Grimsby has told Chowdhurys that it does not have the training to use the gel, which coats the bladder with a protective layer.
Rahman said it was a heartbreaking situation as Imarni "needs her dignity".
He added: "All I need to know is going to cost money, how much and I can go begging to my family, friends and customers. I would happily work my bones off to raise the money. "
One of the family's biggest concerns – the one from the girl suffering less bread – is that she "could get sepsis and die".
It has not been possible to understand why it can not be provided with a grimsby or sheffield.
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Her mum, Susan, who has a similar condition, said the family is getting fed up with being "pbaded away when one department to another", especially when Imarni is in so much bread.
Teacher. Prasad Godbole, consultant pediatric urologist at Sheffield Children's NHS Foundation Trust, said it could be "frustrating to wait for specific treatment to be provided.
"Sometimes this is because of the specialist treatments we are not always available elsewhere."
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bladderhealthuk.org
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