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Last Updated: Thursday, 21 December 2006, 18:22 GMT
'I'm glad we prolonged our sick son's life'
Eleanor
Eleanor fought the decision in the courts and won
Eleanor Bacheikh always knew that her severely disabled baby boy, Mahdi, would die young.

His rare, paralysing genetic condition, spinal muscular atrophy, meant he could not make a sound, nor breathe or swallow on his own.

But when the doctors caring for Mahdi, known then as Baby MB, decided it would be best to turn off the ventilator that was keeping him alive, Eleanor fought the decision all the way to the courts and won.

If you think it is right for your child to go on...fight for them
Eleanor

It bought her an extra nine months with her baby until he passed away in early December, aged two.

Eleanor, from Liverpool, says she has no regrets about her actions.

In an exclusive BBC interview, Eleanor explained: "He was happy. There were no signs that he was suffering. Mahdi wasn't in pain."

Simple pleasures

She said he took pleasure in seeing his family, drawing, watching the television, and being able to go outside, albeit with the assistance of medical staff.

Mahdi had the most severe form of spinal muscular atrophy, type 1, and had lived in a high dependency unit in hospital since he was seven weeks old.

Image of Mahdi
Mahdi died earlier this month

His parents pushed for him to have an operation to help him breathe, called a tracheotomy, to enable him to leave his hospital bedroom and explore the grounds.

Eleanor advised any parents faced with a similar dilemma to fight for their beliefs.

She said: "If you think it is right for your child to go on, if they are not in pain or not suffering, fight for them. Fight for every little bit to spend more time with them."

Eleanor said she and her husband Achraf would consider trying for another baby, but that it was a scary prospect because any future child they have could inherit the same progressive and incurable condition.

Eight in 10 babies born with spinal muscular atrophy type 1 die before the age of two.


VIDEO AND AUDIO NEWS
Interview with the mother of baby Mahdi



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