Meet Charlie Gard. He was born in London on August 4th, 2016 to proud parents Chris Gard and Connie Yates. At first, he seemed to be a perfectly healthy baby boy. When he was only 8 weeks old, he fell ill and his parents had to take him to the hospital.
He was diagnosed with a devastating genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness. His parents had no idea that they were both carriers of a faulty gene until Charlie was 3 months old. The disorder is so rare that it is believed to affect fewer than 20 children worldwide.
His story only begins there. What follows is a story of heartbreak, determination, and his parent’s fight for the very life of their child.
10. Looking For Options
Charlie’s condition is caused by a disruption in the mitochondria, the part of the cell that provides energy to his muscles, kidneys, and brain.
After watching their baby get weaker and weaker, Chris and Connie began to research his condition and found a doctor in America that might have a treatment option for him.
9. A Doctor Is Found
The doctor, a neurologist who specializes in mitochondrial disorders, has treated 18 people with a similar condition to little Charlie’s with an experimental treatment called nucleoside bypass therapy.
It could theoretically repair Charlie’s mitochondrial DNA and help it synthesize again by giving him the naturally occurring compounds his body isn’t able to produce.
Read on to see if this therapy would work for Charlie…
8. Charlie Needs Help
Since October 2016, Charlie has been in intensive care at London’s Great Ormond Street Children’s Hospital. He has suffered significant brain damage due to the disease and is currently fed through a tube. He breathes with an artificial ventilator and is unable to move his arms or legs unaided.
7. A Small Chance
Although Charlie’s specific mitochondrial disorder was different than the one he was treating, the American doctor agreed to try a three-month course of nucleoside bypass therapy. The specialist proposed a therapy that he said would provide a “small chance” of a meaningful improvement in Charlie’s brain function.
That small chance was all Charlie’s parents wanted, but it would come at a steep price…
6. Ready For America
Charlie’s parents were determined to get him to the hospital in America for treatments. They started a GoFundMe page in January 2017 to help raise money for the expensive journey.
In four months, more than 80,000 people contributed, raising over $1.65 million for the treatment and expenses.
5. A Shocking Twist
Just when they were starting to see some hope for Charlie’s future, another obstacle was put into Chris and Connie’s path.
In April 2017, the hospital treating Charlie took his parents to the High Court. They argued that it was in Charlie’s best interests for the therapy in America not to be given and for ventilation to be withdrawn instead.
4. Taken To Court
Under UK law, most decisions about a child’s treatment are made by his parents while consulting with his doctors. When there is a serious disagreement, however, the parents or the doctors can to go to court and ask a judge to decide whether treatment should be given or withdrawn.
3. Withdraw All Treatments
In this case, with “the heaviest of hearts, but with the complete conviction for Charlie’s best interests,” the judge ruled that the hospital could withdraw all of Charlie’s treatments except palliative care “to permit Charlie to die with dignity.”
Keep reading to see what Charlie’s parents did next…
2. All The Way To The Supreme Court
Charlie’s parents have appealed his case up to the UK Supreme Court, but on June 8, 2017, an appeal filed by their attorneys was denied, with the judges ruling that the therapy would be “futile.”
The next day, in response to a request filed by Charlie’s parents, the European Court of Human Rights ruled that the hospital should continue to provide life-saving treatment while they examine the case.
Will Charlie ever receive his treatment? Here’s what’s next…
1. The Final Verdict
On June 27, 2017, Chris Gard and Connie Yates lost their final legal bid to take their son to America for treatment. The European Court of Human Rights sided with the specialists at Great Ormond Street Hospital and concluded it was most likely Charlie was “being exposed to continued pain, suffering, and distress.”
Great Ormond Street Hospital said the decision marked “the end of what has been a very difficult process” and its priority was to provide support for Charlie’s parents.
“There will be no rush to change Charlie’s care and any future treatment plans will involve careful planning and discussion,” a hospital spokesman said.