We’ll fight for Charlie
A FATHER whose six-year-old son survived a rare genetic condition following pioneering treatment is flying from the United States to support the family of Charlie Gard – the little boy whose life support machine could be switched off tomorrow.
Ten-month-old Charlie suffers from a similar form of mitochondrial depletion syndrome and judges in the UK have said his treatment should be withdrawn.
His parents Chris Gard and Connie Yates, from Bedfont, west London, want him to go for experimental treatment in the US. After exhausting all legal options in the UK they have asked European Court judges to examine the issue.
The Strasbourg judges have said Charlie should continue receiving treatment until at least tomorrow while they deliberate.
Arthur Estopinan’s son Arturito was the first to receive the pioneering treatment Charlie’s parents are fighting for their son to receive. He has flown from his home in Baltimore to support the couple.
Arthur and his wife Olga, 42, have been in constant contact with Charlie’s parents and are determined he should also be given a chance to try the pioneering therapy that saved their own son’s life.
The families also have support of Peter Smith from Thakeham, West Sussex, whose son Maxwell, five, has transformed since he received the controversial treatment a year ago for a similar genetic disorder. Maxwell could barely move, swallow, or even move his eyes and can now kick, vocalise and move his body.
The two boys are thought to be among six people alive who suffer with the condition for which there are only 65 documented cases.
Although their conditions are not identical to Charlie’s, all three are caused by a failure of mitochondrial cells, which help release energy.
Mr Estopinan, said: “Even though we are separated by a big ocean we are connected with our hearts along with any other child in the UK with rare diseases. These children are human beings who deserve a chance to live with these experimental medications and get stronger. The medication that has saved my son and other children has a high probability of saving Charlie’s life.
“Why do these doctors have the authority to take consent from Connie and Chris? They are already in a critical state and on top of this they have had to fight the doctors and the legal system which is absurd.
“Charlie may die but to deny him the opportunity to give him an experimental medication is terrible. I will not accept that children have to die when experimental medicines are available to save them.”