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September 2017


Baby Charlie Gard dies after parents' lengthy court battle.

Charlie Gard was born in London on 4th August 2016, apparently healthy but at eight weeks he started to lose weight and strength. In mid-October Charlie was taken to the Great Ormond Street Hospital where he was placed on a ventilator to assist his breathing and in November he was diagnosed with infantile onset encephalomyopathy mitrochondrial DNA depletion syndrome (MDDS), a rare and incurable genetic condition which causes muscle weakness and brain damage.

Charlie's parents contacted Professor Michio Hirano, a neurology expert based in New York, who was working on an experimental therapy called nucleoside bypass therapy and it was agreed that Hirano and the Great Ormond Street Hospital would proceed with this therapy. However, in January 2017, Charlie had several seizures that caused him brain damage and the doctors stated that the experimental treatment would not bring any improvement in Charlie's quality of life and would possibly prolong his suffering. In March the hospital requested that Mr Justice Francis rule that Charlie's life support treatment should be stopped and on 11th April, after assessing the case at the Family Division of the High Court in London, Mr Justice Francis concluded that it would be in Charlie's best interests for his life-support treatment to be stopped and for him to be transferred to a specialist palliative care unit. 

On 3rd May Charlie's parents requested that the Court of Appeal judges should consider the case but after analysing Charlie's case, three Court of Appeal judges rejected the appeal. Charlie's parents then took their case to the Supreme Court in June and also the European Court of Human Rights but also lost their case there. The story had by then received international media coverage and at the beginning of July Charlie’s parents received letters of support from both Pope Francis and President Trump. Also, a crowdfunding page set up to raise money for Charlie's treatment in the USA had by then raised more than £1.3 million. 

In July Professor Hirano visited Charlie and studied recent MRI scans of Charlie's muscle tissue after which he concluded that Charlie would now unlikely benefit from any treatment. 

On 24th July Charlie's parents announced that they were ending their five-month legal battle for Charlie to receive the experimental therapy which they had hoped would improve Charlie's situation. In an emotional speech Charlie's parents spoke about their fight for Charlie's life and their heartbreak over the prolonged legal battle which in the end deprived Charlie of a chance. Here are some excerpts from the speech:

"We will have to live with the 'what ifs' which will haunt us for the rest of our lives but we're thinking about what's best for our son. We have always believed that Charlie deserved a chance at life and we knew that his brain was not as bad it was made out to be and that's why we continued."

"One thing is for sure though. We know deep within our hearts that we have always had Charlie's best interests in the forefront of our minds and despite what some people think of us, we will try to walk away from this with our heads held high. As I said, we know the truth, and in our hearts we know that we have done all of this for our darling little Charlie. We have never done this for selfish reasons. We didn't keep him alive just because we couldn't bear to lose him."

"Despite the way that our beautiful son has been spoken about sometimes, as if he not worthy of a chance at life, our son is an absolute WARRIOR and we could not be prouder of him and we will miss him terribly. One little boy has brought the world together and whatever people's opinions are, no one can deny the impact our beautiful son has had on the world and his legacy will never ever die."

"Charlie has had a greater impact on and touched more people in this world in his 11 months than many people do in a life time. We could not have more love and pride for our beautiful boy." (As quoted by The Telegraph)

On 27th July the High Court ruled that Charlie should be moved to a specialist children's hospice and the day after, on 28th July, Charlie's life support treatment was switched off and he died a week before his first birthday.

Chris Gard and Connie Yates have stated that the money raised for Charlie's treatment will be used to set up The Charlie Gard Foundation which will help children with mitochondrial diseases and other rare illnesses and their families.