Father Who Lost His Daughter to the Same Condition: “Charlie Gard Deserves a Glimmer of Hope”

International   |   Micaiah Bilger   |   Jul 6, 2017   |   10:35AM   |   London, England

A Florida man whose daughter died of the same type of disease that Charlie Gard has urged the British infant’s family not to give up hope.

Florida dad Chuck Mohan said his daughter Gina lived into her teen years before she died of mitochondrial disease, according to the Daily Mail. He urged the hospital to release Charlie, saying 18 other children around the world with the same disease have benefited from an experimental treatment.

“Those parents see a glimmer hope,” Mohan told Good Morning Britain. “In my mind and a lot of parents’ around the world, there’s no choice here; there’s only one decision, that’s to offer Charlie and his parents that glimmer of hope.”

Charlie is suffering from a rare mitochondrial disease, and his parents want to take him to the United States for an experimental treatment. His case has gained international attention as his parents fought a series of court battles for their son, but ultimately lost. Last week, the European Court of Human Rights ruled against his parents’ appeal to take him to the U.S. A British court also ruled that his life support can be removed against his parents’ wishes.

Mohan said raising his daughter was difficult, but they loved her very much. He said Charlie’s parents still have hope for their son, and their hope should not be quashed.

“It is very difficult and emotional but I think what we have here is the love these parents have for this child should supersede the law that’s preventing them from seeking that glimmer of hope for their child,” he said.

“Charlie has a defined and identified point mutation, a specific mitochondrial disease,” Mohan explained. “My daughter didn’t have a scientifically identified mutation, so all we could do was treat the symptoms. In Charlie’s case there are 18 children around the world with a similar condition and all 18 are being treated and receiving positive results.”

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A U.S. doctor and a Catholic hospital in Italy both offered to care for Charlie if he can be transferred.

Prayers and support for Charlie have been flooding in from across the world, including from Pope Francis and U.S. President Donald Trump. Hundreds of people protested the court ruling in London over the weekend, and another protest is planned for this week.

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.

Charlie’s parents have been advocating for their son for months. In March, however, Charlie’s doctors recommended that they remove his life support, saying there was nothing more they could do to help him. The little boy suffered brain damage from his disease and cannot breathe on his own.

But Charlie’s parents took the matter to court, and eventually appealed their case to the European Court of Human Rights. Last week, the high court ruled against them and will not permit them to seek alternative treatments for their son, according to The Guardian.

The judges said they did not think Charlie would benefit from the experimental treatment, and it could cause him greater pain and suffering.

His parents said they are “heartbroken.” They said they are not even allowed to take him home.

On Monday, Charlie’s mother, Connie Yates, posted a message on Twitter saying that they have not completely given up.

“If he’s still fighting, we’re still fighting!!!” she wrote.