Charlie Gard’s parents will put the $1.73 million raised for their baby boy’s medical expenses into a foundation to help other parents with children ill with rare diseases.
“Our beautiful Charlie has been blessed with hundreds of thousands of supporters from around the world. We are so incredibly grateful for all your continued love and support,” said the couple in a statement posted on their website and GoFundMe page.
The couple has committed the funds that were raised to help treat Charlie to create the Charlie Gard Foundation, which will help other children with mitochondrial diseases, and rare childhood illnesses.
“Too many children are losing their fight against rare medical conditions, which emphasizes the need for more research, and we hope we can help deliver this through Charlie’s foundation,” they wrote.
They also want to become an information hub for parents that find themselves in a situation like theirs.
“There needs to be more clarity for parents about parental rights when it comes to making lifesaving decisions about their children. Access to medical treatment, and expert clinicians, should never be denied if funds are available,” they wrote.
The goal is to make such situations clearer for families and for hospitals. The foundation will also be a “lovely legacy for Charlie,” they wrote. “All existing donations from our gofundme fundraising account—and any new donations—will now go toward Charlie’s foundation.”
One of the first donors was GoFundMe.com itself, which was so touched by their cause the crowdfunding site donated $12,900 toward the new foundation.
“A wonderful gesture from the team, and we are extremely grateful for their generosity,” wrote Charlie’s parents.
The couple and their supporters raised $1.73 million in a little over two months to help pay for experimental medical treatment in the United States for Charlie’s rare condition.
But parental rights are much weaker in the U.K. and the courts sided with the hospital that felt the treatment was unlikely to work and would expose the infant to more suffering. It denied the parents the opportunity to seek treatment outside the U.K.
U.K. law gives judges the deciding power over what direction a child’s care takes when the parents and hospital disagree.
After a protracted legal battle, a neurologist from the United States said the condition was too far gone for treatment to remain viable and the parents did not contest a final court decision to have life support withdrawn.
Charlie was taken off life support and died on July 28 from his rare genetic disease, mitochondrial depletion syndrome.
Mitochondrial depletion syndrome is an inherited disease that appears in infancy and causes progressive muscle weakness leading to decreased muscle tone and kidney problems.
Those with the disease most often die from respiratory failure.
Charlie died at 11 months and 24 days old, his illness leaving him brain damaged and unable to breathe unaided.
The case garnered international attention with the pope, President Donald Trump, and Vice President Mike Pence, all making statements supporting the parents in their fight.
Charlie’s short and tragic life brought out thousands of supporters—known as Charlie’s Army—who lent time, money, and moral support to the family.