Peter and Emma Smith understand the hardships that infant Charlie Gard and his parents are facing.
Their son, Maxwell, has the same condition as Charlie, and while he has benefited from experimental treatment, they still have faced numerous struggles. The Sussex, England family said Charlie should have the same opportunities as their son, the West Sussex County Times reports.
Charlie suffers from a rare mitochondrial disease, and his parents want to take him to the United States for an experimental treatment. They raised more than $1 million for his care, and said they want to give Charlie every chance at life.
Chris Gard and Connie Yates said they know the chance of the experimental treatment working is slim, but they want to try anyway for their son’s sake.
But so far, the courts and hospital have refused to allow them to transfer their son to another hospital for the treatment. Two weeks ago, the European Court of Human Rights ruled that the hospital can remove Charlie’s life support and allow him to die.
However, last week, the hospital agreed to consider new evidence involving Charlie’s condition before taking him off the ventilator. A new decision is expected this week.
On Monday, the Smiths told “This Morning” that their son Maxwell is 5 years old now, and his condition has improved. They said he was diagnosed with mitochondrial depletion syndrome when he was 9 months old. His condition is not exactly the same as Charlie Gard’s, but it is similar.
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Here’s more from the report:
… Maxwell – one of only six people alive in the world with the condition – is now on a ‘second generation’ of drug treatment and can wiggle his arms and legs, as well as being able to move his eyes.
“We see that he is trying to do a lot more,” said Emma. “He is vocalising more, making little sounds – it’s little improvements.” …
Both Emma and Peter gave up their jobs to care for Maxwell and raised money to convert a garage at Emma’s parents’ house in Thakeham into a specially adapted home for Maxwell and all the equipment necessary to keep him alive.
“We just take each day as it comes and we’re grateful for each day that he is with us,” said Emma.
That is all that Charlie Gard’s parents want – to give their son a chance to live.
His mother, Connie Yates, told told Good Morning Britain last week, “I’ve heard from doctors that there’s around a 10% chance of this working for Charlie so I think that’s a good enough chance to take.”
She said she does not want her son to suffer. She said it has been “absolute living hell” to wait and wonder when the hospital might end his life support.
“He’s our own flesh and blood and we don’t even have a say in his life whatsoever,” Yates said. “We are not bad parents, we are there for him all the time, we are completely devoted to him and he’s not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn’t do it.”
She said a U.S. hospital agreed to treat Charlie if they could get him there. However, the courts have denied them their right to take Charlie to a new hospital.
In October, Charlie entered Great Ormond Street Hospital in London and was diagnosed with a form of mitochondrial disease that causes progressive muscle weakness and brain damage. His parents discovered that 18 people in the United States have been treated with an experimental medication to remedy the rare condition. Reports have not identified the doctor who agreed to treat Charlie, but it was noted that his parents were aware that no cure was promised.