A Coventry mother whose daughter died of a rare genetic disorder when she was three-years-old has described the pain she feels knowing her son will suffer the same fate.    


In the last seven years, Kiran Nusrat and Irfan Akhtar have helplessly watched their two children, Adeeba and Abdullah, deteriorate with Mitochondrial Depletion Disorder – a condition which results in neurological symptoms that occur in infancy, characterised by generalised muscle weakness. As the disorder worsens, the muscles which control breathing are weakened and ventilator support is required.


The family are now raising funds for Rainbows Hospice for Children and Young People, which provided end of life care for Adeeba, and is giving respite and palliative care to Abdullah.


When Adeeba was born in 2006, there were no signs of problems but at six months old, her parents noticed she was getting weaker.


“One night, Adeeba just suddenly deteriorated and it was a real shock,“ said Kiran. “She lost all of her muscle tone and she was gasping for breath. We took her straight to A&E and she was put on oxygen. My life just came crashing down, it was crazy.”


As the hours progressed, Adeeba just couldn’t get enough oxygen so she was taken to Leicester Royal Infirmary where she was ventilated. Adeeba had a tracheostomy, a surgical procedure to create an opening in the neck at the front of the windpipe, and spent 10 months on the High Dependency Ward where she was finally diagnosed with Mitochondrial Depletion Disorder.


During this time, Kiran discovered she was pregnant and Adeeba was moved to University Hospital Coventry. Two days after Abdullah was born in August 2008, the family all went home.


Kiran said: “It was such a strange time; I was constantly between hospital and home. Then just after Adeeba’s second birthday, she developed Bronchiolitis and she went down to rock bottom. She was moved back to Leicester. Adeeba lost her reactions so her face and body remained in the same posture and she was like that for 18 months.”


Abdullah continued to grow but when he was six months old, Kiran and Irfan were left heartbroken when their son began showing the same traits as his sister, and just after his first birthday, he was also admitted to Leicester Royal Infirmary.


“It was devastating to see the same signs in Abdullah; like Adeeba, he just couldn’t get enough oxygen,” said Kiran. “They were both in cubicles next to each other and it was just heart-breaking. We were having talks about turning Adeeba’s life support machine off and I was literally watching both of my children deteriorate before my eyes. It is so hard to describe the pain. You expect your children to grow up and be happy and I just felt absolutely helpless, I couldn’t do anything for my children.


“While I was living on the ward, I saw other children go to Rainbows but I didn’t want my children to go there as I thought it was the place they went to die. But I came to visit and it was amazing, it is such a fantastic place.”


Adeeba was taken to Rainbows for end of life care and she passed away in July 2010 at the age of three.


“Although she had been very poorly, to lose my daughter was such a shock,” Kiran said. “I was there for her throughout and it was absolute torture. She was my life, my everything. What made it worse was that I knew I was going to see Abdullah go through the same and there was nothing I could do about it.


“The care Rainbows provided was fantastic, everything was sorted for us, it was like magic and I knew I wanted Abdullah to benefit from the same level of care.”


Although the family live in the West Midlands, Kiran receives special funding for Abdullah to have respite and palliative care at Rainbows, the only place in the East Midlands to offer onsite specialist ventilated care for children and young people. At Rainbows, Abdullah is cared for by staff trained to look after technology dependent children, ensuring the highest level of care. The children who are on ventilators are able to access every aspect of Rainbows, the soft play room, music therapy, the sensory room and the hydrotherapy pool, as well as the garden where they use specially adapted swings and roundabouts.


Kiran said: “It is great that we can come to Rainbows as it is a break away for me as well as he needs 24 hour care.


“I know that Abdullah could die at any time and it is so hard to be strong but I have to be. I know what is coming and the pain to expect, I have the pain every day. It is like somebody stabbing me in the heart but you just have to get through each day.”


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