After months of a heartbreaking battle with mitochondrial disease, Charlie Gard passed away on Friday at a hospice, in London. The 11-month old died just one week shy of his first birthday.
“We should be planning Charlie's first birthday, but instead we're planning his funeral,” his mother, Connie Yates told the Daily Mail last night.
The whole world was gripped after hearing of the little boy’s plight. His parents were desperately seeking legal aid to treat their son, and endured an exhaustive battle against Great Ormond Street Hospital. They wanted to take him to America for nucleoside bypass therapy, but specialists at GOSH claimed the treatment was too experimental and wouldn’t work.
Doctor Michio Hirano, a neurology professor from Columbia University in New York, wanted to provide Charlie with the experimental therapy but later conceded with GOSH.
“Unfortunately, a MRI scan of Charlie’s muscle tissue conducted in the past week has revealed that it is very unlikely that he would benefit from this treatment,” he said, in court.
The Court of Appeal and Supreme Court ruled that life support treatment should end, and that Charlie should be allowed to die with dignity.
Charlie’s parents then relented and took their son to a hospice where he could die, peacefully.
In regards to Charlie’s funeral, family spokeswoman Alison Smith-Squire told The Sun: "They haven't finalised any plans yet, but they have decided Charlie will be buried with his beloved toy monkeys."
“Chris and Connie spent the weekend quietly with close family. They face the anguish of registering Charlie’s death,” she added.
His father Chris poignantly brought one Charlie’s two toy monkeys to each court hearing during their legal battle.
“We always had a little part of Charlie with us,” Connie explained on why they brought the soft toy to court.
Charlie received a loving tribute from his parents on the steps of the High Court in London last week: "Mummy and Daddy love you so much, Charlie. We always have and we always will and we are so sorry that we couldn't save you.”
Supporters of Charlie – named “Charlie’s Army” - campaigned for the youngster and raised £1.35 million on an online fund-raising site. The couple has decided to use the donated funds to start up a charity.