Our thoughts are with the parent's during this awful time.

Like Baby OT, Sophie has mitochondrial disease and is fully ventilated because she does not have the muscle strength to breathe adequately.

Sophie was given a tracheotomy before we received a diagnosis. When test results revealed abnormalities with the mitochondrial respiratory chain, we were told that if the doctors had known this before her tracheotomy, she would've been refused the operation and would've been left to die.

Sophie is a very happy little girl. Despite her physical disabilities she is full of love for life and is loved by all that are fortunate enough to meet her.

Doctors should not be allowed to make life or death decisions and judges certainly shouldn't.

Doctors can be wrong and 'are' often wrong. How can they give a prognosis for baby OT if his type of mitochondrial disease is so rare there has only been one other case? Any mitochondrial expert will tell you that mitochondrial disease affects different people in different ways and therefore it is almost impossible to give an accurate prognosis.

We was told to take Sophie home and enjoy her for what little time she had left. Well I'm sorry, we've been home for nearly a year now and Sophie shows no signs of going anywhere soon!

I'm glad our Sophie's diagnosis was received after her tracheotomy - otherwise she too would have fell victim to this huge injustice.