Azizur Rahman and his wife Tanya Miah faced a reality that no parent should ever face. Their little daughter Diyanah, the most precious person in their lives, was born with kidney failure.
This left him needing 24/7 care and meant he had to be tube fed. The family made sacrifice after sacrifice to ensure their daughter had everything she needed.
Azizur took a break from his own law studies to care for Diyanah and ensure that his wife could continue her training as a lawyer. But while the family faced being in and out of hospital and Diyanah endured grueling treatment, her loving father took his sacrifices one step further.
Realizing that her daughter would need a new kidney, she decided to donate herself. “As a father, you would do anything for your children,” he said.My main motivation was Diyana.
“She has had many surgeries over the years, the biggest surgery being the removal of part of her lung. She bounced back each time, and I always told myself if a child like Diyanah could go through so much and be this happy and joyful, then I could be like that too.”
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The family is now sharing four-year-old Diyanah’s story in the hope that others will ignore misinformation and religious stigma and donate their blood and organs to save others.
“Diyanah was in and out of hospital frequently, she was on hemodialysis which meant she had a central venous catheter inserted into her chest. If he had a fever we would have to go straight to A&E, which has happened many times and admission could take several days. “It was about when he would need a kidney, not whether he would,” said Azizur, a 34-year-old father.
“So my mother said she would donate first because it would allow me to donate later when Diyanah inevitably needed a second transplant. However, it turned out that my mother was medically unfit to donate and the decision was up to me.”
Before donating his kidney, Azizur needed to reduce his weight from 120 kg to 95 kg; This he achieved after hard work in 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 found the image of me being cut open and having an organ removed very difficult.”
“My main motivation was Diyana. He has had many surgeries over the years; The biggest surgery was the removal of part of his lung. She came back every time and I always thought to myself that if a child like Diyanah could go through so much and be as happy and joyful as her, then so could I.
“The team at Manchester Royal Infirmary were fantastic and the operation went really well, we have a real relationship with the hospital staff. The doctors, nurses and support staff at Royal Manchester Children’s Hospital have also become part of our family and we are always grateful to them.”
Azizur underwent kidney transplant surgery at Manchester Royal Infirmary, one of the hospitals run by Manchester University NHS Foundation Trust, which also runs Wythenshawe Hospital’s specialist Heart and Lung Transplant Centre. And the procedure was successful.
Diyanah is now experiencing her rise as she should, as a happy and healthy young person. But the transplant wasn’t the only big change in your father’s life.
“This has been kind of a wake-up call for me too, now that I’ve lost weight and improved my lifestyle I want to stay that way. The first few weeks after the transplant were difficult, I was getting tired of walking to the end of the street; A five minute walk took me almost 30 minutes.
“Diyanah is 90 to 95 percent better now, the feeling of having a different kidney is strange to her. The amount of time we spend in and out of hospital has seriously affected our social life and there are so many things we want to do at the moment, I have never been able to take Diyanah swimming and her first I can’t wait to take it away.
“He’s just started school too, so this transfer couldn’t have come at a better time. He can be more himself and hopefully live a normal enough life without getting sick and being constantly hospitalized.
As a religious man, one of the challenges Azizur faced when faced with the need to donate was the stigma attached to donating blood or organs by some of his religious peers; This was a situation that people of all religions could sometimes encounter. Educating people about what their religion allows and what it does not allow is something Azizur is now very passionate about.
“As a Muslim, as a child I would walk by and your elders would tell you that we don’t do such things, that was my norm. The line most people follow is that we must take good care of our own God-given bodies and that we have no right to tear them apart. I remember when the last changes were made to opting out of or participating in organ donation, my friends and family would text me to make sure we were opting out of that option.
“When people found out I was planning to donate to Diyanah, they would ask me and say, ‘are you sure?’, ‘you know you are not allowed to donate your organ.’ Even my father said we should wait. I always said she was my daughter, she needed this and I wanted her to have the best chance in life, to go to school and not be in the hospital all the time.
“I did my own research on what my religion allows and it’s funny, it’s the exact opposite of these misconceptions. The Holy Quran says: ‘Whoever saves one life, it is as if he saved the life of all humanity’. And after all, donating an organ does just that.
“In addition, regarding organ donation, many fatwas (religious edicts) have been issued over the years allowing organ donation both while alive and dead. The conditions are that it is not for profit or gain and that it does not harm the person’s own health, which complies with NHS procedures regarding donation.
“People who asked me if I was sure about donating would say, ‘oh, I didn’t know that.’ We’ve all been taught since we were young but we never looked for ourselves, you don’t find out until you have a reason to look. “Regardless of my faith, I would do it because I have a daughter, but it was comforting to know that my faith allowed me to do it.”
The father has now appealed to thousands of people who are desperately waiting for an organ that could save their lives and spend priceless time with their loved ones.
“Thousands of people are waiting for an organ, and when it comes to people of South Asian descent, there aren’t many people who would voluntarily give up an organ, and I think that’s due to religion and misinformation,” he said.
“If someone has the opportunity to make a difference in someone’s life, they should do it; It is important for people to make their wishes clear to their families about what they want to do upon their death; This will make a huge difference in the lives of many people. This is allowed in our religion, there is no reason why it shouldn’t.
“People of South Asian descent on the waiting list will find it more difficult because you want an organ that is the best match possible; They should not miss this opportunity because fewer people with similar backgrounds are donating. If you needed an organ, you would want one, so shouldn’t we really give one whenever we can?”