Azizur Rahman and his wife Tanya Miah were faced with a reality that no parent should ever have to experience. The most precious person in their lives, their little girl Diyanah, was born with devastating kidney failure.
As a result, she required 24/7 care and had to be fed through a tube. The family made sacrifice after sacrifice to ensure their daughter had everything she needed.
To care for Diyanah and ensure that his wife could continue her training as a lawyer, Azizur interrupted his own legal education. But when the family was in and out of the hospital and Diyanah had to undergo grueling treatment, her loving father went one step further.
Realizing that his daughter needed a new kidney, he decided to donate his. “As a father you would do anything for your children,” he saidMy main motivation was Diyanah.
“She has had several procedures over the years, with the main surgery being the removal of part of her lung. She came back every time and I always said to myself, if a child like Diyanah could go through so much and be just as happy and bubbly as she is then, and so can I.”
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Now the family is sharing four-year-old Diyanah’s story in the hope that others will ignore misinformation and the stigma within religion and donate their blood and organs to save others.
“Diyanah was in and out of hospital a lot, she was on hemodialysis, which meant she had a central venous catheter inserted into her chest. If she ever had a fever, we had to go straight to the emergency room, which happened several times and the admission could last for a few days. It was about when she would need a kidney, not whether she needed a kidney,” father Azizur (34) explains.
“That’s why my mother said she would donate first, because it would allow me to donate later when Diyanah inevitably needed a second transplant. But it became clear that my mother would not be medically able to donate and that would be up to me.”
Before Azizur could donate his kidney, he had to reduce his weight from 120 kg to 95 kg, something he managed after a lot of work in the hospital and a strict health and diet regime: “As a father you would do anything for your children, but I didn’t want to think about the procedure at all – I knew I had to do it, but I had a hard time seeing the image of me being cut open and an organ removed.
“My main motivation was Diyanah. She has undergone several procedures over the years, the largest of which was the removal of part of her lung. She came back every time and I always said to myself, if a child like Diyanah could experience so much and be as happy and vibrant as she was, then I could too.
“The team at Manchester Royal Infirmary were great and the operation went really well, we have a real relationship with the staff at the hospital. The doctors, nurses and support staff at Royal Manchester Children’s Hospital have also become an extension of our family and we are extremely grateful to them.”
Azizur underwent the kidney transplant procedure at Manchester Royal Infirmary, one of the hospitals run by Manchester University NHS Foundation Trust – the trust which also runs the heart and lung transplant center at Wythenshawe Hospital. And the procedure has been a success.
Diyanah now lives exactly as she should: a happy and healthy young person. But the transplant wasn’t the only major life change for the father.
“It was also a bit of a wake-up call for me. Now that I’ve lost weight and improved my lifestyle, I want to keep it that way. The first few weeks after the transplant were difficult, I was tired to walk to the end of the street – a five-minute walk took me almost 30 minutes.
“Diyanah is now 90 to 95 percent better, the feeling of having another kidney is foreign to her. The amount of time we have spent in and out of hospital has had a serious impact on our social lives and there is a lot we want to do now. I have never been able to swim with Diyanah before and can’t wait to take her for the first time.
“She also just started school, so this transplant couldn’t have happened at a better time. She can be more herself and hopefully live a normal life without feeling sick and constantly being hospitalized.
As a religious man, one of the challenges Azizur faced when faced with the prospect of having to donate was a stigma surrounding donating blood or organs from some of his religious peers – something that people of all faiths can sometimes face to get. Educating people about the reality of what his religion does and does not allow is something Azizur is now very passionate about.
“As a Muslim, as a child you are told by your parents that we don’t do these kinds of things, so that was my norm. The rule that most people adhere to is that we must take care of our own body, because it was given to us by God and we have no right to take it apart. I remember when recent changes were made to opting out or signing up for organ donation, friends and family messaged to make sure we opted out.
“Once people knew I was planning to donate to Diyanah, they asked me about it and said ‘are you sure’, ‘are you aware you can’t donate your organ’ – even my dad said maybe we should to wait. I have always said that she is my daughter, she needs it and I want her to have the best opportunities in life, to go to school and not be in the hospital all the time.
“I did my own research into what my religion would allow and it’s funny, it’s the exact opposite of those misconceptions. The Qur’an says: ‘If anyone saves a life, it is as if he saves the lives of all mankind’. And ultimately, donating an organ is exactly that.
“In addition, a number of Fatwas (religious edicts) have been issued over the years regarding organ donation, allowing organ donation both during life and death. The conditions are that it must not be for profit or gain, and it must not be harmful to one’s own health, all of which is in accordance with NHS procedures regarding donation.
“I told those who asked if I was sure I wanted to donate, and they said, ‘Oh, I didn’t know.’ We all learned it since we were young but never looked into it ourselves, until you have a reason to look into it you wouldn’t find out. Regardless of my faith, I would have done it because it’s my daughter, but it was comforting to know that my faith actually allows me to do that.”
The father has now appealed for the thousands of people desperately waiting for an organ that could save their lives and give them precious time with their loved ones.
“Thousands are waiting for an organ and when it comes to people from a South Asian background, not many would voluntarily give up an organ – which I think comes down to religion and misinformation,” he said.
“If someone is given the opportunity to make a difference to someone’s life, it is important that people make their wishes clear to their family about what they would like to do after their death – it would make a huge difference to several lives. It is allowed within our religion, there is no reason not to do it.
“People from a South Asian background on the waiting list will find it more difficult because you want an organ that is as close a match as possible. They should not miss this because fewer people with a similar background donate. If you needed an organ you’d want one, so shouldn’t we really give one where we can?