When is Charlie Gard’s funeral, will it be private or public and what’s the foundation his parents are starting?
CHARLIE Gard's parents are preparing for their son's funeral after their battle to save his life ended in heartbreak.
The 11-month-old's battle with a rare genetic illness touched people across the world as his parents Connie Yates and Chris Gard pursued a legal case to have Charlie treated in the US.
Who was Charlie Gard?
Charlie was born on August 4, 2016, on what his parents described as the “best day of our lives”.
But soon they noticed he was weaker than other babies and he was eventually diagnosed him with the inherited condition infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).
Both of his parents Connie and Chris were unknowingly carrying the faulty gene that causes the incurable illness, which leads to muscle weakness and brain damage.
They raised more than £1.3million to pay for pioneering drug treatment in the US.
But doctors treating him at Great Ormond Street Hospital said it was kinder to let Charlie die with dignity as he was probably suffering.
After a long legal battle that reached the highest court in Europe, Connie and Chris ended their fight because “time has run out” for Charlie and the damage was irreversible.
Charlie died when his life support machine was switched off on Friday, July 28, exactly a week before his first birthday on Friday, August 4.
The little lad hung on for 12 minutes after life support was removed.
When is Charlie Gard's funeral?
Connie and Chris have started planning their son's funeral but have not yet said if it will be a private or public affair.
But they have said Charlie will be buried with his two favourite cuddly monkey toys, which his mum and dad were seen clutching during court hearings.
The couple spent the weekend grieving privately with family and were due to register Charlie's death on Monday, July 31.
What has his family said about the funeral?
Mum Connie said: “We should be planning Charlie’s first birthday but instead we’re planning his funeral.”
Connie, 31, and Chris, 33, were mourning their son at home in Bedfont, West London.
Family spokeswoman Alison Smith-Squire added: “They haven’t finalised any plans yet but they have decided Charlie will be buried with his beloved toy monkeys.”
Alison also told how she burst into tears when Connie sent her a message reading simply: "He's gone."
A family friend said: “They wanted to gather their thoughts and start the grieving process.
"They have the funeral to plan and they don’t know yet whether they want a private service or something more public.
“They also want to start a charity foundation with money people donated.
";They will be looking to campaign for changes to the legal and health system after their nightmare experience.
"They just wanted to hide away from the world for a day so they could grieve in private."
The couple are still in shock at how powerless they have felt ever since Great Ormond Street Hospital launched its first legal bid to turn off their son’s life support system in February this year.
Connie said that she thought of her family as tiny fish at the mercy of the huge ones circling at the hospital.
Charlie's parents Connie and Chris have announced they will use the £1.3million donated by well-wishers to set up a foundation to help other children with rare diseases.
In a statement Connie and Chris said: "In the following weeks we will be setting up The Charlie Gard Foundation that will help other children with mitochondrial diseases, and rare childhood illnesses."
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