Family of Bradford woman on her heart-breaking illness

Mazhar Hussain shared his daughter Romesa Mazhar’s story, one which has left the family suffering for nearly four decades.

Romesa, 37, was born with cryptogenic cirrhosis, a condition that affects the liver.

Romesa, who now has two children – a daughter aged nine and a son who is six – has had five organ transplants in her life.

Mr Hussain, from Shipley, said his daughter's health is failing after her condition worsened in December last year.

Romesa and her father in hospital (Image: Mazhar Hussain)

“She’s in constant pain and agony and is struggling to fight the illness,” he said.

“She’s weak and she’s basically living on medication.

“Her case is very unique. The majority of people with her illness don’t live as long as she has.

“As a parent, it’s very, very hard.”

He added that things are particularly difficult for Romesa’s two children.

“Her daughter cries a lot, especially at night,” he said.

“She takes her mum’s clothes and cuddles them, she screams and cries and prays to Allah, saying please save my mum’s life and give her longer to live.

“It’s unbearable for us to see her upset like that.”

Romesa's children (Image: Mazhar Hussain)

Due to Romesa’s illness, Mr Hussain and his wife have had to look after the children and provide care for them.

“We drop them off at school and when we do, her daughter always asks if her mum is going to come home, or stay in hospital,” he said.

“She always says that she misses her.

“The biggest fear they have is of losing their mum, and what the future holds. They know they have their grandparents, but it’s still not nice.”

Romesa and her children (Image: Mazhar Hussain)

Romesa had already had three liver transplants and a kidney transplant by the time she was in her teens.

In a Telegraph & Argus article from 1993, Mr Hussain spoke of his hope for Romesa, a year after they were pictured together with Romesa’s mum, Parveen Hussain, in another T&A story.

An article from the year 2000 details a then-14-year-old Romesa’s wait for her first kidney transplant, which she had in 2002.

A T&A piece on Romesa from 1992 (Image: Telegraph & Argus)

Romesa in the T&A in 1994 (Image: Telegraph & Argus)

A 1998 T&A piece discusses how the family faced “reliving the agony” as Romesa’s younger brother, Kabeel – who also has cryptogenic cirrhosis – was on the waiting list for an organ swap.

“When Kabeel was ill, it was like being back to square one again,” Mr Hussain said.

Kabeel, who is now 31, had a kidney transplant around four or five years ago, Mr Hussain added, and is now okay.

A 1998 front-page story on Romesa and Kabeel (Image: Telegraph & Argus)

Mr and Mrs Hussain have five children in total. Only Romesa and Kabeel suffer from cryptogenic cirrhosis.

Their other children are Aqsa, Shoaib and Idris.

“Romesa is the eldest, and Kabeel is the third-eldest. So, at one point, two out of our three children had the illness,” Mr Hussain said.

“After that, doctors told us not to have any more children.

“But as Muslims, we believe everything is up to Allah, so we took the risk.”

Mr Hussain went on to explain how the family fulfilled one of Romesa’s wishes last year, but it later had a negative impact on her health.

“It was her dream to go to Pakistan, where our family are from,” he said.

“She hadn’t been since 2006, and her children had never been at all.

“She said ‘my kidneys are failing, and I want to see Pakistan again’.

“In December last year, Romesa, her daughter, her mum, myself, my brother and his wife all went.

“It was like the trip of a lifetime for Romesa. We stayed for three weeks.

“But she felt unwell on the last day. She had a severe stomach pain and we had to take her to hospital, even though our flight back home was at midnight.

“They gave her lots of medication so she could travel safely, but she never got better after that incident.

“She’s been struggling, hurting and going downhill since then.”

Romesa with her dad and two children (Image: Mazhar Hussain)

Despite the hardship, Mr Hussain hopes that something positive can come from Romesa’s story.

“I hope it can help other parents and children who have been through a similar situation,” he said.

“Romesa has fought very hard, and I hope that can inspire others.”