by Azizur Rahman and his wife Tanya Miah faced a reality that no parent should have to face. The most precious person in their lives, their little girl Diyanah, was born with catastrophic kidney failure.
It left her needing 24/7 care, and meant she had to be fed through a tube. The family made sacrifice after sacrifice to make sure their daughter had everything she needed.
In order to take care of Diyanah and ensure that his wife could continue her training to become a lawyer, Azizur put his own legal training on hold. But as the family struggled to get in and out of hospital, and Diyanah suffered from harsh treatment, her loving father took his sacrifices one step further.
When he realized that his daughter would need a new kidney, he made the decision to donate his own. “As a father, you would do anything for your children,” he said, “mDiyanah was the main motivation.
“She has had various procedures over the years, the biggest surgery being the removal of part of her lung. She bounced back every time and I always said to myself if a child like Diyanah could go through so much so that I could be as happy and lively as she is.”
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Now, the family is sharing four-year-old Diyanah’s story in the hope that others will ignore misinformation and 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 a central venous catheter was inserted into her chest. If she ever had a temperature we would have to go straight to A&E, which happened often and the admission could be for a few days. It was about when she would need a kidney, not if,” explained dad Azizur, 34.
“Because of that, my mother said she would donate first because it would allow me to donate later when Diyanah needed a second transplant. But it was clear that my mother would not be medically fit to donate and it would be up to me.”
Before Azizur could donate his kidney, he had to drop his weight from 120kg to 95kg, which he managed after a lot of work with the hospital and a strict health and diet regime: “As a father, you would do something anything for your children. , but I didn’t want to think about the procedure at all – I knew I had to do it but the image of me being cut open and having an organ removed was difficult.
“My main inspiration was Diyanah. She has had several procedures over the years, the biggest surgery being the removal of part of her lung. She bounced back every time and I always said to myself if a child like Diyanah could go through so much and be as happy and vibrant as she is then as I could.
“The staff at Manchester Royal Infirmary were outstanding and the operation went very well, we have a real relationship with the staff at the hospital. The doctors, nurses and support staff at the Royal Manchester Children’s Hospital are an extension of our family too, we are truly grateful.”
Azizur underwent the kidney transplant procedure at the Royal Manchester Infirmary, one of the hospitals run by the University of Manchester NHS Foundation Trust – the trust that runs Wythenshawe Hospital’s specialist Heart and Lung Transplant Centre. And the procedure was successful.
Diyanah is now living in her lift just as she should, a happy and healthy youngster. But the transplant was not the only major life change for the dad.
“It was great news for me too, now I’ve lost the weight and my lifestyle has improved, I want to stay like this. The first few weeks after the transplant were difficult, I would be tired walking to the end of the street – a five minute walk was taking me almost 30 minutes.
“Diyanah is now between 90 and 95 per cent better, it’s strange for her to realize that she has a different kidney. The amount of time spent in and out of hospital has had a huge impact on our social life and there is so much we want to do now, I have never been able to take Diyanah for a swim and I can’t wait to take her for first time. .
“She’s also just started school, so this transplant couldn’t have happened at a better time. She can be more herself and hopefully live a pretty normal life without being sick and being admitted to hospital all the time.”
As a religious man, one of the challenges Azizur faced when facing the prospect of donating was the stigma surrounding donating blood or organs from some of his religious peers – something people of all faiths could face. call them sometimes. Azizur is now very passionate about educating people on the dos and don’ts of their religion.
“As a Muslim, as a child you are told when you pass by your ancestors that we do not do this sort of thing, and that was my custom. The line that most people adhere to is that we must take care of our own bodies as God gives them to us and that we have no right to take it away from each other. I remember when there were recent changes to unsubscribe or opt in for organ donation, friends and family messaged to make sure we opt out.
“When people knew I was going to donate to Diyanah, they would ask me about it and say ‘are you sure’, ‘you know you’re not allowed to donate your organ’ – my father even said that maybe we should wait. I’ve always said it’s my daughter, she needs it and I want her to have the best chance in life, to attend school and not be in hospital all the time.
“I did my own research on what my faith would allow and it’s funny, those misconceptions are the exact opposite. The Quran says: ‘If anyone saves a life, it is as if he saves the life of all mankind’. And ultimately that is what organ donation does.
“Furthermore, several Fatwas (religious edicts) have been issued over the years regarding organ donation that allow both living and deceased organ donation. The conditions are that it cannot be done for profit or gain, it cannot be harmful to one’s own health, which is in line with NHS donation procedures.
“I would tell those who asked if I was sure about a grant and say ‘oh, I didn’t know that’. We have all been taught since we were young but we didn’t look at ourselves, until you have a reason to research it you wouldn’t find it. Regardless of religion I would do it because she is my daughter, but it was comforting to know that my religion allows me to do it.”
The dad has now appealed to thousands of people who are 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, there aren’t many who will voluntarily give up an organ – which I think comes down to religion and misinformation,” he said.
“If someone has the opportunity to make a difference to someone’s life they should, it’s important that people make clear wishes to their family about what they want to do after they die – it would make a huge difference to so many lives. It is allowed within our religion, there is no reason not to.
“People from a South Asian background will find it harder on the waiting list because you need an organ as best as possible, they shouldn’t miss out because fewer people from similar backgrounds donate. If you needed an organ you’d want one, so shouldn’t we be donating one when we can?”
