By Dave Andrusko
During the incredibly intense and emotional battle to save little Alfie Evans, in the background for many people were thoughts of similar case of another seriously ill baby boy whose parents unsuccessfully fought an unresponsive hospital and judiciary in 2017.
That was Charlie Gard, the son of Connie Yates and Chris Gard, who have established a foundation in his memory to give other sick children a “brighter future.” Charlie died in July, one month short of his first birthday.
Alfie’s very serious degenerative brain disease was never definitively diagnosed. But the hospital in which he lived since December 2016 fought with all its resources to foil an attempt by his parents, Tom Evans and Kate James, to take him to Italy for further diagnosis and possible treatment. Nothing else could be done, the Alder Hey Children’s Hospital proclaimed.
He died five days after his ventilator was disconnected. Alfie was just shy of his second birthday.
In Charlie’s case, his parents raised more than £1.3 million to pay for therapy in America. But Great Ormond Street Hospital for Children in London was even more adamant than Alder Hey, insisting that experimental therapy could not help. It would be “futile.”
As with Alfie Evans, they won the right to withdraw life-support treatment.
Through their foundation, which they launched today, Connie Yates and Chris Gard want to raise awareness of Charlie’s disease— mitochondrial depletion syndrome, a very rare genetic condition which causes progressive muscle weakness and brain damage.
“Our vision is to enhance the quality of life for mitochondrial sufferers through innovative research, family support, and raise much-needed awareness for this devastating condition. ….
“Mitochondrial-related diseases kill more children than childhood cancers, and it’s our vision to change this statistic.
“Our aims are to deliver hope for a brighter future – and one day find that all-elusive cure – and ensure we provide mito sufferers with every opportunity to get the very best out of life.”