Charlie Gard’s Parents Starting a Foundation to Help Other Kids With Genetic Disorders

International   |   Micaiah Bilger   |   Jul 31, 2017   |   12:26PM   |   London, England

Charlie Gard’s parents hope that their son’s legacy will help spare other children from what their family had to go through.

Reports indicate the family hopes to set up a foundation to help other children with rare genetic disorders.

The British infant died Friday after his life support was removed, following a lengthy court battle between his parents and hospital. He would have celebrated his 1st birthday on Aug. 4.

Charlie suffered from a rare mitochondrial disease and brain damage. He was at the center of a massive international debate after the hospital refused to allow an experimental treatment to help him and also refused to transfer him to another hospital that would allow the treatment.

Charlie’s parents took their fight to numerous courts to protect his life but to no avail. The courts argued that it was in Charlie’s best interest to be removed from life support.

During the trying ordeal, Chris Gard and Connie Yates, Charlie’s parents, raised more than £1.3 million (about $1.7 million) in donations for his medical care and legal fees.

The Sun reports the money now will be used to set up a charity to help children like Charlie who are suffering from genetic conditions. The family said they want to ensure that Charlie’s voice “continues to be heard.”

About 84,000 people donated to help Charlie and his parents through the GoFundMe fundraising page that his mother set up. Donations continue to pour in, even after the infant’s death.

Charlie’s mother plans lead the charity, and his father plans to return to his job as a postman, a person close to the family told The Sun.

Here’s more from the Telegraph:

The money was meant to pay for legal bills and the cost of flying their desperately ill baby and a medical team to the US. However, the fighting fund has barely been touched, in part because the couple’s’ lawyers were working on a pro bono basis.

A clue to how that money could now be used may be found in a the funding website Miss Yates, 31, set up. She explains at some length how there are limited resources for research into ways to treat complicated and rare genetic conditions.

“We need to change things and show how determined parents can forge a path for other families encountering similar obstacles,” she says. “We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives.”

His parents fought persistently to take Charlie to the United States for an experimental treatment. Yates and Gard said they knew the chance of the experimental treatment working was slim – about 10 percent, but they wanted to try anyway for Charlie’s sake.

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However, the courts and hospital refused to allow them to transfer their son to another hospital. About a month ago, the European Court of Human Rights ruled that the hospital can remove Charlie’s life support and allow him to die.

Questions remain about whether Charlie could have benefited from the experimental treatment, had it not been delayed for months during the legal battle. The court battle began in March.

U.S. neurologist Dr. Michio Hirano, an expert in the field, previously said Charlie had an 11 percent to 56 percent chance of benefiting from the experimental treatment. However, when Hirano and a group of doctors examined Charlie two weeks ago, they said he no longer had a chance of benefiting from the treatment.

After Hirano gave his final opinion, Connie Yates and Chris Gard decided to end the legal battle to get their son experimental treatment. Based on the new evidence, the couple said Charlie’s condition had deteriorated too much and there no longer was any hope of the experimental treatment working.

On Friday, the news broke that Charlie had died after his life support was removed. Leading pro-life advocates mourned Charlie’s deathsaying it is a very concerning harbinger of things to come.

After Charlie’s death on Friday, his parents spent the weekend mourning with their family, according to The Sun.

“We should be planning Charlie’s first birthday but instead we’re planning his funeral,” his mother said.

Despite all of his problems, Charlie’s parents – and millions like them – believe that Charlie is a valuable, living human being who should be given a chance to live.

Leading pro-life advocates helped Charlie’s parents fight for his life. Pope Francis and President Donald Trump also expressed support for the sick infant.

Charlie’s parents brought Terri Schiavo’s brother Bobby Schindler to London to help them fight for care for their son. Schindler spoke with LifeNews exclusively about their invitation.

Schindler told LifeNews: “The critical issue here is not a political one, but the simple notion that families know what is best for their loved ones.

“Charlie’s situation is very reminiscent of my family’s battle to save my sister, Terri. Hopefully being here can help his parents, Connie and Charlie, deal with the day-to-day emotional roller coaster, as they fight for their son’s right to live,” Schindler added.