Eight weeks after Charlie Gard was born, his mother began noticing that something was not right. He was losing weight and growing weaker.
Charlie later was diagnosed with an extremely rare disease called mitochondrial depletion syndrome. Now, his London, England hospital wants the High Court in London to allow them to remove his life support, which would end his life, the Daily Mail reports.
His parents, Connie Yates and Chris Gard, are fighting the hospital’s plan, and trying to raise money for an experimental treatment in America that could help their son.
“We love our child with every ounce of our being and we want what’s best for him,” Yates told reporters. “It’s as if Charlie is being sentenced to death.”
According to the report, Charlie is the 16th person in the world known to have the rare mitochondrial disorder. The disease makes his organs and muscles very weak; a ventilator aids his breathing, and a nasal tube provides his food and water, the report states.
Here’s more from the report:
Great Ormond Street in London, where baby Charlie is cared for, told the judge that every day he is alive ‘is a day that is not in the child’s best interests’ and would like his treatment to be withdrawn by Easter so he could die with ‘dignity’.
Charlie’s parents’ barrister Sophia Roper responded by saying: ‘His parents believe that he is in much better shape than the hospital does.’
A hospital spokesperson said they have tried different treatments with Charlie but nothing has worked. Having “exhausted all available proven treatment options,” the hospital believes it is “best” for Charlie to be taken off life support and allowed to die, according to the spokesperson.
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This week, High Court Judge Justice Francis said he was “deeply sympathetic” to the family’s situation, and he scheduled a court date for April 3.
“This is one of the saddest cases to come before this court,” Justice Francis said. “His parents have been described as utterly devoted to Charlie and work extremely hard to be expert parents and understanding this disease.”
The family’s attorney said they are grateful that the hospital is not going to rush into pulling Charlie’s life support.
“… it is not said that Charlie is in pain or suffering unduly because of his treatment,” Roper told the Daily Mail.
Meanwhile, the family is trying to raise more than $1 million to bring Charlie to the U.S. for a pioneer treatment. Find the online fundraiser here.
His mother and father have been by his hospital bed constantly, hoping to spend as much time with them as they can, according to the report.
“We know we may not have much time left. In those precious moments in that hospital room we are a family together, a team,” Yates said. “If we change his nappy, he moves his arms. Occasionally, he manages to open his eyes. It is such a struggle because this wretched disease affects every part of the body – it even makes his eyelids weak.
“But if we lock eyes we can see him trying to open them wider. And we feel that our presence calms Charlie,” she continued. “It’s not much, but every little flicker convinces us that we, his Mummy and Daddy, are doing the right thing to not give up on him.”