Baby MB is 17 months old and suffers from spinal muscular atrophy type 1 - a progressive condition leading to paralysis. Type 1 is the most severe form of the condition. The condition is incurable. He cannot breathe unaided and receives endotracheal ventilation at hospital which is keeping him alive.
Baby MB's cognitive abilities are intact, but he has limited movement. He can move his eyebrows, feet, and his fingers very slightly - the rest of his body is immobile. He cannot chew or swallow and is fed through a feeding tube.
The Hospital Trust has made an application to withdraw ventilation from Baby MB. A hearing will rule this week whether he is to have life-saving treatment withdrawn.
"The parents wish for everything possible to be done as long as their child is not in great distress and has a worthwhile existence from which he is able to gain enjoyment," said specialist healthcare public law solicitor Chris Gawne who is acting for the family.
"The ruling from the Court will determine whether their son is to live or die. We hope for a positive verdict which will enable Baby MB's life to continue."
His parents are fighting for ventilation not to be withdrawn.
"We want our son to have a tracheotomy so we could take him home and give him a life instead of him being stuck in a hospital cubicle. We are very hopeful we can persuade the court that his quality of life is good enough so that treatment should not be withdrawn," said Baby MB's parents.
The hearing is taking place at the Royal Courts of Justice on Thursday 2nd and Friday 3rd of March.
Spinal muscular atrophy (SMA)
SMA is a progressive neuromuscular condition affecting motor neurones in the spinal court and brain stem. It leads to weakness of the muscles supplied by the motor neurones - in particular the limb muscles, swallowing muscles and trunk muscles including breathing muscles. SMA Type 1 is the most serious category.
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- 15/03/2006: Baby MB allowed right to life – specialist solicitor Chris Gawne expresses the parent’s delight
- 09/03/2006: Judge to rule on right to life case
- 27/02/2006: Girl given life-sustaining treatment after medical experts recommend treatment
- 30/01/2006: Right to treatment - 'champions' to have say over treatment
- 18/11/2005: Right to die debate ignited as doctor struck off after GMC hearing over allegation of 'intentional killing'
- 30/08/2005: Right to life in dispute as hospital win right to withdraw treatment
- 09/05/2005: Natural causes verdict at the Luke Winston-Jones inquest
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The staff at Alexander Harris have as always been helpful and informative: Daniel, Leicester
