'I do not believe that it can be in my son's best interests to withdraw his life support. I'll care for him whatever it takes'

A MOTHER is fighting a legal battle with Great Ormond Street Hospital for the life of her 11-month-old baby boy.

- Robert Kellaway

Neriman Braqi was devastated to learn the hospital is asking for legal permission to withdraw life support for Ayden who has been in intensive care since November.

He has an extremely rare inherited condition that attacks the nervous system in his spine and has left him paralysed and unable to breathe alone.

In spite of the condition, known as Smardi, Ayden recognises people and every evening enjoys cuddles with his mum.

Full-time mum Neriman, 33, from Grays in Essex has spent every weekday at her son's bedside since November, living in a room in accommodation opposite the hospital in London.

She said: "I go in to see him from about 9.30am and sit with him until lunchtime. In the afternoon, between 3.30pm and 6.30pm, depending on how he is doing I am allowed to pick him up and we can have cuddles.

"It is the most wonderful feeling and I know he can sense it and it does him good.

"Then I sit with him for the rest of the evening, often until midnight or one or two o'clock in the morning." At the weekends single mum Neriman returns home to see her four other children - three boys and a girl aged between seven and two who are cared for by relatives when she is away.

Smard1 is so rare there are thought to be only 100 cases diagnosed worldwide.

Many children with the condition die in the first year but others have lived into early adulthood and enjoyed fulfilling lives.

Neriman first realised something was wrong when Ayden was just a few weeks old and she thought she had seen blood in his nappy. She went to A&E as he began having difficulty breathing and after tests his condition was detected when he was 11 weeks.

He was admitted to intensive care on November 17 where he has been treated ever since. She said: "I know Ayden's condition is bad, he cannot move his arms or legs, his hands or his feet.