A girl who is suffering constantly tells her family that she does not want to be 12 years old

Imarni Chowdhury, 11, suffers from interstitial cystitis – a chronic disease caused by a deficiency of the bladder wall.

A girl who feels constant pain "as if she had third degree burns" said that she did not want to live until her next birthday.

Imarni Chowdhury, 11, suffers from interstitial cystitis – an incurable chronic disorder caused by deficiencies in the lining of the bladder.

The girl, who also suffers from epilepsy and narcolepsy, takes large doses of painkillers to treat her condition, since even urinating can be unbearable.

Her father, Rahman Chowdhury, said she had "not had a baby" because of the extent of her pain.

He said, "She did not have a child. 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 missed her clbades a lot. We can not do much as a family because we have to be constantly next to Imarni. All she can do is sit and watch cartoons on television to change her mind.

She is suffering from epilepsy and narcolepsy. She loved to dance, swim and scoot and it was difficult for her to see her siblings jumping into a hot tub or riding a motorcycle.

The girl, who also suffers from epilepsy and narcolepsy, takes large doses of painkillers to treat her condition, since even urinating can be unbearable.

Mr Chowdhury said his family had been informed of the availability of a special gel that could relieve his daughter's pain.

But, although the Sheffield and Nottingham specialists both agree that this solution is available, they say it must be approved for Imarni to be treated at home.

Mr Chowdhury said: "The NHS wrote to us: it can only be provided by our main manager, who in our case is the Grimsby Hospital. But they say that they do not have the training to do it.

Imarni's mother, Susan, who suffers from the same illness, is treated at the Diana Hospital of the Princess of Wales Hospital in Grimsby. But the procedures to which she has access are not accessible to her daughter because of her age.

Irmani has a tube in her stomach that allows her to urinate in a bag.

Chowdhury said the disease had been exposed to infections in the last year and was worried that she could "contract sepsis and die".

His mother also said that his daughter had been "pbaded from one department to another" due to a communication problem at the hospital.

She said, "It's been too long. It seems like there is a communication problem and we are pbading from one ministry to another.

Her father, Rahman Chowdhury, said she had "not had a baby" because of the extent of her pain.

"It's so terrible that she is terrified to go to the hospital because she is so sick and knows everything that has happened in the past. It is difficult to explain to a young man. We want her to receive the treatment she needs.

"Nottingham said that they had sent a letter to Sheffield and Grimsby. They said that they had not received a letter. Then, five weeks, they say they have received a letter, but they do not have a license for the treatment to give to a child. I saw the treatment that my daughter needs.

"The disease is not cured and most doctors do not know it and no one understands the pain the disease causes. The nerves around my bladder have been burned to prevent spasms. & # 39;

Professor Prasad Godbole, pediatric urology consultant at the NHS Foundation of Sheffield Children's, said, "At Sheffield Children's, we work to provide the best possible treatment to our patients. We understand that it can be frustrating to expect that a specific treatment be provided.

"Sometimes this is because the specialized treatments we recommend are not always available elsewhere. We are doing everything in our power to coordinate with local, regional and national NHS organizations to support our patients as quickly and safely as possible. & # 39;