A letter to Charlie Gard: ‘I am so sorry that we failed you’

Dear Charlie Gard,

I am so sorry that we failed you and that you were not allowed the opportunity to survive and thrive. I regret that you lived and died in a world that did not value your life because all human life should be treasured. I apologize that you were treated with a lack of dignity and respect.

I know you suffered from a very rare disease, an inherited condition that caused your muscle weakness and loss of motor skills. Only 16 others have ever been diagnosed with your same disease, but that only makes you as unique as you were in the eyes of God.

By Chris Codden

Your condition was diagnosed very early in your life, when you were only 2 months old, when your parents noticed your health was declining.

There was hope. The specialists at the Great Ormond Street Hospital in London tried all the treatments they were capable of, but to no avail.  However, there was a new treatment that had worked for a few patients in the United States. Your mom and dad were again hopeful.

Because this treatment was expensive and experimental and the United Kingdom health care system would not fund it, your parents launched a GoFundMe page to raise money to bring you to the U.S. to be treated by Dr. Michio Hirano,

who had worked with patients with similar conditions and had success.

He was willing to administer a new oral medication treatment that would potentially repair your mitochondrial DNA by giving you the natural compounds that your body could not produce on its own.

But, as your parents were in the process of raising the needed funds, the Great Ormond Street Hospital decided the treatment was not in your “best interest.” Since the hospital’s specialists had failed you, they wanted you taken off life support.

The hospital went to court to ask a judge to decide your fate, hoping it would pressure your mom and dad to remove your ventilator.  Your mom and dad didn’t succumb to their desires and continued to fight to provide treatment for you.

Charlie Gard, who was born in England with mitochondrial DNA depletion syndrome, is pictured in this undated family photo. The baby’s parents, Chris Gard and Connie Yates, have lost their legal battle to keep Charlie on life-support and seek treatment for his rare condition in the United States. (CNS photo/family handout, courtesy Featureworld)

While judge after judge ruled in favor of the hospital, your parents continued to do all they could to save your young life.  The Vatican-owned pediatric hospital Bambino Gesu —commonly called the “pope’s hospital” — New York Presbyterian Hospital and Columbia Medical Center all offered to have you come to be treated. World leaders came to your defense, including Pope Francis, the members of the U.S. House of Representatives Appropriations Committee, celebrities and President Trump.

While this new treatment may have given you a chance in February, by the time the United Kingdom High Court heard your case at the end of July, the window of opportunity had closed. You had deteriorated too much for the treatment to work. The hospital’s stubborn insistence that your life should end prevailed.

Even when your parents tried to let you come home to die, the courts denied you that last little bit a peace.  You were transferred to a hospice instead.

I’m sorry that you weren’t allowed to go to another hospital when there was more of a chance the treatment would have worked. I’m sorry that the judges didn’t allow your parents to make decisions for your health care.

I’m sorry that all the judges, hospital administrators and lawyers didn’t understand that you were a valuable member of the human race, a living being that should have been given the basic right to life. I’m sorry that your parents, your loving mom and dad — who were entrusted with your precious life from the moment you were conceived, who fought for you,  who knew you best — weren’t allowed to choose what was best for you.

My prayer is that your parents be comforted by the Almighty God that gave you life and that now embraces you in his loving arms.

I pray that your short life, ending just one week before your first birthday, has taught the world an invaluable lesson: that all human life is a great gift from God, our Creator, and all life should be entrusted to His loving care.

I pray for all children who suffer and all parents who accompany their children through that hard painful journey, feeling helpless to ease the suffering of their precious child.

We share in the words of Pope Francis: “I entrust little Charlie to the Father and pray for his parents and all those who loved him.”

May we learn a lesson from your courageous life, so that the other “Charlies” who come after you are treated with dignity and honor.

With loving respect, Chris.

Chris Codden is director of the Office of Marriage and Family of the Diocese of St. Cloud. Contact her at ccodden@gw.stcdio.org.

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The Visitor is the official newpaper for the Diocese of Saint Cloud.

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