Charlie Gard’s parents Chris and Connie announce they will use £1.5million donated to set up foundation in tragic tot’s name to help other children with rare diseases
CHARLIE Gard's parents will use £1.3million donated by well-wishers to set up a charity to help other children with rare diseases.
Baby Charlie’s life support was switched off last month after his parents dropped their legal battle to fly him to US for treatment.
The couple from Bedfont, South West London said in a statement: "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 and would like to take this opportunity to advise you of what we shall be doing with the money raised for Charlie's cause."
They said the charity would help other kids with rare childhood illnesses by funding research and campaigning for parents' rights.
They added: "Too many children are losing their fight against rare medical conditions, which emphasises the need for more research, and we hope we can help deliver this through Charlie's foundation.
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"We also intend on becoming a hub of information for parents that may find themselves in a situation like ours.
"There needs to be more clarity for parents about parental rights when it comes to making life-saving decisions about their children.
"Access to medical treatment and expert clinicians should never be denied if funds are available.
"We will be looking at ways in which we can help make things clearer for families and hospitals alike.
"We feel that the foundation will be a lovely legacy for Charlie and we hope that you will all continue to support us in honouring the life of our little warrior as he helps other poorly children and their families."
The tragic tot, who passed away a week before his first birthday, will be buried with his two favourite cuddly monkeys.
His parents Connie Yates and Chris Gard often clutched the toys in court during their legal bid.
Speaking last month, Connie, 31, said: “We should be planning Charlie’s first birthday but instead we’re planning his funeral.”
Brain-damaged Charlie had genetic condition mitochondrial depletion syndrome and could not move.
His parents raised £1.35million to get him experimental drugs in the US.
But doctors at London’s Great Ormond Street Hospital said it was kinder to let him die with dignity as he was probably suffering.
The courts ruled against the family but the case was reopened after claims from a US expert.
However, new tests convinced Connie and Chris, 33, Charlie was beyond help and they dropped the case.