Blow of heart for an 11 year old girl who has so much pain that she does not want to live until the age of 12

A girl suffering from a rare and excruciating illness said she did not want to live until her 12th birthday next week.

Imarni Chowdhury is constantly suffering from interstitial cystitis, a chronic condition of the bladder.

Doctors at the Diana, Princess of Wales Hospital, where Imaani is being treated, said the 11-year-old was probably the only girl in Lincolnshire to suffer.

To cope with the pain, she takes large doses of sedatives because even urinating can be excretory.

Addressing Grimsby Live, Father Rahman Chowdhury broke down, explaining the anguish experienced by her family for two years while she was fighting for proper treatment in Imarni.

"She did not have a child," he said.

"People have no idea of ​​the extent of the pain – it's like having third-degree burns or stage four cancer.

"When I asked her what she wanted for her birthday next week, she said that she just wanted to die.

"She is so poor that she has missed a lot of clbades, we can not do much as a family, because we have to be at Imarni's side all the time." She can only watch cartoons at home. television to change his mind there.

"She has epilepsy and narcolepsy, she loves to dance, swim and scoot, and she can not see her siblings jumping into a hot tub or riding a motorcycle."

Rahman was told that there is a special gel that could alleviate his daughter's symptoms.

The specialists from the Sheffield and Nottingham hospitals agree that the treatment exists, but they argue that it must be approved before being able to treat Imarni to Grimsby.

Since she is only 11 years old, she can not get surgery at Princess of Wales Diana Hospital, although her mother Susan receives care for the same problem at Grimsby.

To urinate in a bag, Imarni installed a tube in his stomach, which his father claimed was prone to infection.

"The NHS wrote us to tell us that it could only be provided by our main manager, who in our case was Grimsby Hospital." But they say they did not not training to do it, "said Rahman, who works part-time. time at Agrah restaurant in Cleethorpes.

"All we need to know is whether it's going to cost money and how much I can beg my family, my friends and my clients. I would be happy to work with me to raise money.

"But we do not even know if it 's all about money – all she wants is to get better and we do not know who to talk to."

"Our concern is that she can contract sepsis and die, we just do not know why she can not get this treatment, why can not Grimsby do it, and why can Sheffield not do it?" "

"We know that the NHS is overwhelmed and doctors say that they have never seen the condition in a child before."

Rahman added, "It's heartbreaking not to trust her and miss school, the school has been very helpful, but she needs her dignity and should be unleashed like any other child."

Susan claimed that poor communication at the hospital had led Amarni to be transferred from one department to another.

She said, "It's so bad that she is terrified to go to the hospital because she is so sick and knows everything that has happened in the past.

"It's hard to explain to someone at such a young age, we want them to get the treatment they need."

Nottingham stated that they had sent a letter to Sheffield and Grimsby, that they had not received a letter and then received a five-week letter, but they did not receive a letter. do not have a license for the treatment to give to a child.I have seen the treatment that my daughter needs.

"The disease has no cure and most doctors do not know it and no one understands the pain that the disease causes.I had the nerves around my bladder burned to prevent spasms. "

Professor Prasad Godbole, pediatric urology consultant at the NHS Trust Foundation of Sheffield Children's, said they were working to provide the best possible treatment to their patients.

He added: "We understand that it can be frustrating to expect that a specific treatment be provided.

"Sometimes this is due to the fact that the specialized treatments we recommend are not always available elsewhere.We do everything in our power to coordinate with local, regional and national NHS organizations to help to our patients as quickly and safely as possible. "