Parents hit £1.2m target for child’s treatment
April 3, 2017 2 comments
Parents of a baby boy with a life-threatening genetic condition have raised £1.2 million for an experimental treatment.
The boy was born last August but began to lose weight and strength when he was just eight weeks old. He was admitted to hospital where he was diagnosed with ‘mitochondrial depletion syndrome’. This is an extremely rare condition which causes the muscles to become progressively weaker. The infant is thought to be one of just sixteen children in the whole world who has it.
British doctors claimed there was “no accepted cure” for what the child has and he should therefore be allowed to die with dignity. However his parents are unsurprisingly determined to keep their son alive at any cost.
The London couple found an experimental treatment for the condition in the United States and launched a crowdfunding effort to pay for it. Now they have raised the required amount they hope they will be permitted to try.
Speaking to the BBC, the parents claimed their son “can move his mouth, he can move his hands”. They said while he couldn’t keep them open fully “he can still open his eyes and see us”. The couple “don’t feel he’s in pain at all”.
Meanwhile a spokesperson from Great Ormond Street Hospital for Children NHS Foundation Trust said the boy was “very unwell when he was admitted … and has remained under 24-hour care on our intensive care unit”. The child’s condition “continued to deteriorate” following his admission and the medical staff now believe they “have exhausted all available proven treatment options”.
The High Court is expected to make a decision about the child’s care this week.
Photo by Tom Page via Flickr under a Creative Commons licence.
April 3, 2017