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A girl with a chronic bladder condition is so bad that she told her family that she did not want to live until her 12th birthday.
Imarni Chowdhury, 11, is the only girl in Lincolnshire to suffer from interstitial cystitis.
The misunderstood condition causes long-term pelvic pain and urination problems, which means that the young must be subjected to strong sedation with painkillers.
She has been fighting disorder for two years now and is currently at the Princess Diana Hospital in Grimsby, Lincolnshire.
Because of his age, the hospital has no procedure in place to treat his illness, but his mother, Susan, who suffers from a similar problem, is being treated.
Specialists at the Sheffield and Nottingham hospitals told the family that a special gel was available, but that this gel must be allowed for Imarni to receive it in Grimsby.
But the hospital says they can not administer the treatment because they do not have the training to do it.
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Imarni's father, Rahman, said his daughter now had a tube inserted into her stomach so that her urine could pbad into a bag, but was prone to infection.
He had to pay for swabs to keep the tube and the point of entry in his stomach clean.
She did not have a childhood. People have no idea how big the pain is, "he said.
"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 many of her school clbades. We can not do much as a family because we have to be constantly beside Imarni.
"All she can do is sit and watch cartoons on TV to avoid it. She is suffering from epilepsy and narcolepsy.
"She loved dancing, swimming and riding a bike and it was hard for her to see her siblings jumping into a hot tub or riding a motorcycle."
Rahman told Grimsby Live that the family did not know if frost treatment was expensive, but said he would "work with me to collect money."
"But we do not even know if it is a money issue," he said.
"All she wants is to improve and we do not know who to talk to. We are afraid that she will contract sepsis and die.
"We just do not know why she can not receive this treatment. Why can not Grimsby do it? Why can Sheffield not do it?
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"We know that the NHS is overwhelmed and doctors say they have never seen this condition before in a child."
Imarni's mother had nerves around her burnt bladder to help her cope with her own situation, saying that "no one understands the pain the disease causes."
"Nottingham said that they sent a letter to Sheffield and Grimsby and said they had not received a letter," she said.
"Then, a five-week letter indicates that they have received a letter, but they do not have a license for the treatment to be given to a child. I saw the treatment that my daughter needs.
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"The disease is not cured and most doctors do not know it and no one understands the pain that the disease causes."
Professor Prasad Godbole, pediatric urology consultant at the Sheffield Children's NHS Trust Foundation, said: "At Sheffield Children, we work to provide the best possible treatment for our patients.
"We understand that it can be frustrating to wait for a specific treatment. Sometimes this is because the recommended specialized treatments 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 in the safest and fastest way possible."
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