Arina Grossu, FRC’s Director of the Center for Human Dignity, delivered the following speech on July 6, 2017 at a press conference for #CharlieGard at the National Press Club.
Good afternoon and thank you for being here. We are encouraged by the outpouring of love and support that Charlie Gard and his parents, Chris and Connie have gotten from all over the world, in their quest to take Charlie out of the U.K. for nucleoside bypass therapy. They have already raised $1.7 million in private funds and they even had offers from a U.S. hospital for free treatment and also for him to stay at the Vatican hospital. We are encouraged that Pope Francis and President Trump have expressed support for Charlie and his family. President Trump has requested a meeting with British Prime Minister Theresa May at the G20 Summit in Germany tomorrow and a family spokesman said, “The White House has been in talks with Charlie's family, GOSH, the UK Government, the Department of Health and the American doctor who wants to treat Charlie.”
The question at hand is not whether the treatment is going to work for Charlie, who has TK-2 related mitochondrial depletion syndrome. We hope that it does and we know that it has for others with less severe forms of mitochondrial depletion syndrome—others who are alive today as a result of their treatment. Why should Charlie be deprived of the same chance?
We urge the British government, the courts, and the hospital to release Charlie. You are holding him hostage. This is a case about parental rights coming into conflict with socialized medicine. Who should decide what’s in the best interest of Charlie? His parents. Not the courts. Not the hospital. Not the government.
As Wesley Smith so aptly put it, “The refusal to allow Charlie’s parents to remove their baby boy from the hospital is an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing. And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies—and others facing futile-care impositions—ultimately owned by the hospital and the state?”
It is Chris and Connie, his parents, who have the right to seek treatment for their son—treatment that has been successful for little Maxwell Smith, another British boy who was also diagnosed with TK2-related MDS. He was diagnosed at 9 months and treated with nucleoside bypass therapy. He is still alive at 5 ½ years old as a result. Doctors of another boy, Arturo Estopiñan, told his parents that there was no treatment and that he would die soon. Arturo is still alive today at 6 years old as a result of this therapy. Arturo’s parents said that their son “would surely be dead by now” if he was not granted access to the treatment. The therapy is a simple oral medication.
Please don’t deprive Charlie of a chance at therapy. Charlie’s parents have said in a tearful plea, “We’re not allowed to choose if our son lives.” They also said, “If he’s still fighting, we’re still fighting.”
Chris and Connie, please be assured that we join you in prayer and we support you in your right to parental authority.
We must protect the rights of parents to make decisions for their children’s health—decisions that are based with best interests in mind. We must protect Charlie, the most vulnerable person among us.
We are praying for you Charlie, Chris, and Connie at this most stressful time. You are not alone. You have supporters all around the world.
And to the U.K and Great Osmond Street Hospital, please free Charlie so that he can have a fighting chance at life. The world is watching and waiting for you to do the right thing and release Charlie to his parents.