Charlie Gard passed away on July 28, 2017. Click here to read Charlie Gard, an epilogue.
My original post is shown below.
By the time you read this post, Charlie Gard may have been taken off life-support.
Pope Francis and Donald Trump actually agree on something – Charlie Gard’s right to live.
Strange are the ways of the world.
Charlie is a ten-month old child in the UK with a terminal mitochondrial disease. He has severe brain damage and has been on a ventilator for months.
Charlie’s parents want to take their son to the United States for an experimental treatment. A treatment that could potentially improve his quality of life. They want what they believe is best for Charlie.
They understand that it is not a cure.
Mitochondrial diseases are severe and horrible. There are no cures. They are uniquely devastating. It is always ultimately terminal, especially when it strikes an infant – the little ones are the hardest hit.
Charlie has suffered catastrophic brain damage. The doctors are of the opinion that since the treatment that Charlie’s parents are seeking will not reverse the brain damage, it is pointless. Charlie cannot be “cured”.
The judges agree.
The UK and EU courts have ruled that Great Ormond Street Hospital may take Charlie off his ventilator, against his parent’s wishes.
It was not about the money, or the cost to the Government. Charlie’s parents have raised money over $2 million CDN through gofundme to cover the expenses. There were offers of help from high places – doctors in the United States, President Trump, the Pope, to name a few.
I want to pause here.
Charlie’s parent’s situation is difficult to relate to when you are watching from the sidelines. I realize that a lot of people, agree with the doctors’ point of view on this. They believe that Charlie’s parent’s judgment is clouded by grief, and that physicians, especially at a world-renowned children’s hospital, cannot possibly be wrong.
But, consider this: If doctors only treated patients who were guaranteed to be cured, where would that leave us? Does Charlie Gard not have a right to treatment, irrespective of his chances to be cured?
Treatment and hope are not pointless. Believe it or not, recovery, even from severe brain damage caused by a mitochondrial disease, is potentially possible.
I have stood in Charlie’s parents shoes. I still live it, every day.
As some of you have read, my daughter also has a rare terminal mitochondrial disease. She suffered devastating brain damage (progressive cavitating leukodystrophy) when she was nine months old. I too was told that my daughter will just continue to get worse, that there is no treatment, no cure. The time and resources needed to treat her were not worth it. She was practically dead to them, just like Charlie Gard.
And just like Charlie’s parents, I refused to listen to the doctors. As every parent of a terminally ill child will do, I researched, reached out, and never stopped trying to find something, anything, to help my daughter.
And my daughter did not get worse. With treatment, she stabilized. And with the time that treatment brought her, she regained many of the skills that she had lost.
Her doctors can only attribute it to neuroplasticity – the brain’s ability to reorganize itself. My daughter went from having the motor functions of a two month old infant at 10 months old, to now being able to speak, orally eat, use a manual wheelchair, and even a walker, at 2.5 years old.
I know it sounds like small steps, but believe me, these are huge for our daughter and us.
One year after my daughter suffered her catastrophic brain damage, new peer-reviewed research has reported two children with the same rare mitochondrial disease as my daughter, alive at 12 years old and 16 years old. There is evidence that the treatment my daughter received – not a cure – definitively helps to stabilize and even improve their condition.
Yes, they are still disabled, and ultimately still terminally ill.
But does that matter? They are alive, and living. My daughter has been given the gift of time, time with me, time to be alive.
I know many children with life-limiting diseases who are tube fed, on ventilators, who are quadriplegic, blind, deaf, who cannot hold up their own heads. But, I see the light in their eyes as they watch Frozen, their smiles when they feel the sunlight on their skin, the joy that they bring to the world.
Charlie’s parents want to give Charlie a chance to live – not a cure – but a chance to experience life. They understand that it is the merest of chances, but they still want to try.
But the State did not agree.
Good, caring, loving, conscientious parents have been told that faceless, nameless entities know what is best for Charlie, better than his parents, better than other doctors, including mitochondrial disease specialists at other hospitals who are willing to treat Charlie and respect his right to life and treatment.
The State has declared that Charlie Gard has no right to live. Charlie’s parent’s right to choose medical treatment for their child has been stripped from them.
It is absolutely appalling how cruelly Charlie Gard and his family have been treated, and I cannot shake the fear that one day, this could be Anakha.
I pray that the most powerful man in the world and the revered Pontiff can help little Charlie Gard.