UK parents Chris Gard and Connie Yates refuse to give up on their 10-month-old son Charlie. This week, they’re taking their next step in the battle to keep him alive.
Charlie has a rare genetic condition called mitochondrial depletion syndrome. He can’t breathe on his own, and he can’t move his arms or legs. His heart, liver and kidneys are affected. He is deaf, and suffers severe epilepsy. He has experienced significant, irreversible brain damage.
Gard and Yates have raised more than $2 million to take their baby to the US for treatment. But in April, a High Court judge ruled Charlie’s life support should be turned off.
Last month, three Court of Appeal judges upheld that ruling.
Tomorrow, Gard and Yates will appear at a preliminary hearing of the Supreme Court. They’re hoping to prove they have an arguable case to overturn the ruling and take Charlie to the US.
However, the three Court of Appeal judges want their side of the story to be heard too. They have released their 17,000 word ruling, which details why they believe it’s time to let Charlie die.
A lot of it comes down to this treatment in the US. It has often been described in the media as “pioneering”, but the truth is nucleoside therapy has never been tried on someone with Charlie’s form of the condition, RRM2B.
A consultant in paediatric metabolic medicine, identified only as Professor A, gave evidence.