On August 4, 2016, Chris Gard and Connie Yates, two British citizens in their thirties, brought their first child into the world. Young Charlie Gard was born a healthy and vibrant baby, with no signs of birth defect or disease. As young Charlie reached his third month, however, doctors began noticing that he was failing to grow and thrive. Charlie also began having seizures and then lost the ability to breath and eat on his own.
Genetic testing at Charlie’s hospital, London's Great Ormond Street Hospital, discovered that Charlie has a rare genetic condition, called “mitochondrial DNA depletion syndrome,” or “MDDS” which slowly prevents Charlie’s cells from making energy. MDDS is a condition so rare that, currently, only 16 children across the globe have it, and a current medical science has no cure.
Charlie's parents have battled to keep him on life support at the hospital, despite court-appointed doctors and guardians having concluded that no treatment existed to help him recover to a normal healthy life. As such, the British health system deemed Charlie’s case to be hopeless and instructed Charlie’s parents to prepare for the end of his life.
Earlier this year, a U.S. neurologist suggested that a new experimental compound might help Charlie. However, it had never been tried for this particular disease, and it had never been tried on laboratory mice, let alone a human patient with MDDS. And yet, this experimental therapy, called “nucleoside therapy,” has shown some cause for hope in laboratory experiments on human stem cells. Charlie’s seizures have become more frequent, evidencing the advance of severe brain disease, and his British doctors decided that the experimental treatment would only prolong Charlie’s suffering.
In February 2017, Charlie’s parents nonetheless sued in the British courts to obtain permission to transfer Charlie to the United States for nucleoside therapy treatment. The British judge ruled against Charlie’s parents and, in April 2017, ruled that the hospital could withdraw all but palliative, or comfort, care from Charlie.
The family appealed the decision in both the British appellate and supreme courts, and then to the European Court of Human Rights, and their appeals were denied at every level – the last ruling coming on June 27, 2017, less than two weeks ago.
In accordance with these rulings, the London hospital planned to remove Charlie from life support on June 30, but then agreed to delay doing so in order to grant Charlie’s parents more time to prepare for the end of Charlie’s life. On July 2, Pope Francis I argued on Twitter that the Charlie’s parents should be allowed to "treat their child until the end." A Vatican hospital in Rome offered to take Charlie under their care, but the British government refused, citing the potential for continued and additional suffering that Charlie may experience as his quality of life deteriorates. Just last week, again fighting for Charlie, the Vatican offered to grant Vatican City citizenship to Charlie, so that he can be removed from United Kingdom jurisdiction. Again, the British government refused these overtures.
On July 5, 2017, British Prime Minister Theresa May, told the British Parliament that the hospital could entertain additional information about Charlie’s case, although stopped short of allowing for his transfer to the United States or to the Vatican for nucleoside therapy treatment. On Friday, July 7, 2017, both New York Presbyterian Hospital and the Vatican’s Gesu Bambino Hospital offered to accept Charlie for the purpose of administering the experimental treatment on Charlie. Alternatively, both hospitals offered to send the experimental drug to the London hospital for administration in England. The British government remained silent.
Charlie’s parents have continued to fight for their child. Their fundraising page on GoFundMe raised nearly US $2 million from over 80,000 people around the world who hope to give Charlie’ parents the resources to seek nucleoside therapy treatment. Charlie’s parents acknowledge that the experimental treatment is a very, very long shot. And yet, what parent of a sick child would not take every possible measure, or spend enormous sums of money, to give their sick child a 1-in-a-million, or even a 1-in-a-billion chance, for survival. As a parent myself, I would do ANYTHING within my power to save my child if she were in this condition and facing imminent death.
Because of the fundamental differences between the British socialized healthcare system and the U.S. healthcare system, Chris Gard and Connie Yates must seek permission from their own government to allow for Charlie to receive the experimental treatment, either in London, America or at the Vatican. Until now, the British government has uniformly denied that further extraordinary care be extended to Charlie, and it was unlikely that his parents would be allowed to remove him from the United Kingdom – a last ditch attempt to save the life of their child. [PAUSE]
As Christians we believe in miracles, don’t we? As I was finishing writing this sermon on Friday afternoon – literally as I was writing the previous paragraph, the New York Times published an article titled, “London Hospital Reconsiders Decision to Turn Off Sick Baby’s Life Support.” The article reads, in part:
LONDON — In an abrupt shift, a London hospital said on Friday that it would reconsider its decision to turn off life support for Charlie Gard, a brain-damaged and terminally ill British infant, in light of “fresh evidence” about a potential treatment.
The statement from Great Ormond Street Hospital was the latest twist in a case that has raised difficult bioethical and legal questions, and has caught the attention of Pope Francis and President Trump.
Charlie, 11 months old, has a rare and debilitating genetic condition that has no cure, and the hospital had said that letting him die was the only humane option to end his potential pain and suffering. The hospital, where the boy has lived since October, won a series of court rulings, most recently last week, authorizing it to withdraw life support.
On Friday afternoon, however, the hospital changed course.
“Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment,” the hospital said in the statement. “And we believe, in common with Charlie’s parents, it is right to explore this evidence.”
The hospital said on Friday that it had not changed its view that Charlie had experienced “catastrophic and irreversible brain damage” and that the experimental treatment, known as nucleoside therapy, “would be futile and would prolong Charlie’s suffering.”
Nonetheless, the hospital said, it would ask the High Court — which on April 11 ruled in the hospital’s favor — to look at the case again “in light of the claimed new evidence.” The hospital added, “This is not an issue about money or resources, but absolutely about what is right for Charlie.”
God is great, isn’t He?
Charlie Gard’s case raises very complicated ethical, social, and end-of-life issues which we cannot address here today. However, we can focus on what scripture tells us, and what our own United Methodist Book of Discipline tell us, about how some Christians would approach Charlie’s case. [Please note that my remarks today are limited to end-of-life decisions for children who have already been born; my remarks are not intended to address in any manner the complicated and controversial issues surrounding the abortion of a human fetus.]
As Christians, and as United Methodists, our scriptural tradition and our own United Methodist Book of Discipline tell us that each human life is sacred. In today’s reading from the Book of Genesis, we see that God created all human beings, male or female, in God’s own likeness and image. Each of us, from the wealthiest CEO to the lowliest child born into poverty, carry within ourselves God’s likeness and God’s image. As such, we disrespect God when we take human life for granted or treat human beings as means to an end, rather than as the holy beings.
This view is codified in The Book of Discipline of The United Methodist Church. Section 161(I) of the Social Principles contained in The Book of Discipline provides: “We recognize and affirm the full humanity and personhood of all individuals with mental, physical, developmental, neurological and psychological conditions or disabilities as full members of the family of God...We call on the Church and society to protect the civil rights of persons with all types and kinds of disabilities.”
Another touchpoint for the sacredness of human life -- whether of a person with a disability or of a healthy person -- comes from the Christian Disability Rights movement. During the last 50 years, Christian disability advocates, such as Nancy L. Eiesland, have convinced Western nations that the historical Biblical view of disabilities as a “punishment” from God or as the consequence of an individual’s or a family’s “sins,” is NOT consistent with Jesus’ teaching. This historical perspective is often described as a “victimization” mentality towards disability. To the contrary, Jesus teaches us that we must love our neighbor without qualification: God’s love extends to ALL persons, without regard to their physical, mental or ability status.
Nancy L. Eiesland, a former theologian at the Candler School of Theology, a United Methodist seminary, wrote about this transformation of public perceptions regarding the Biblical approach to disability in her book, The Disabled God: Toward a Liberatory Theology of Disability (Abingdon Press, 1994). Eiesland challenges the victimization mentality towards persons with disabilities with an innovative conception of Jesus Christ as a “Disabled God.” Eiesland writes about the Christ who returns to his Apostles at Pentecost bearing the visible wounds of his passion and crucifixion. (Luke 24:36-39) Eiesland’s “liberatory theology of disability” seeks to eliminate skewed stereotypes of disability and exchanges visions of “disabled persons” with a vision of “differently” abled persons, who are created, as we read in Genesis 1:27, in the “image and likeness of God.” Eiesland also seeks to dis-establish the historical utopian perspective of a society full of able-bodied and perfectly healthy individuals, with a perspective that we live in a multi-abled society, where we can accept all persons for whom they are, physically, mentally and emotionally.
Eiesland writes that, if God created all humans in His own image and likeness, then we must accept that each of us, who carry with us disabilities large and small, are “God-like” beings despite these imperfections. Eiesland’s God is a God who is large enough to encompass the vast diversity of human experience -- whether that be reflective of disability, gender and sexual preference, or ethnicity, or religious affiliation. Nancy L. Eiesland died at the age of 44 in 2009, after suffering from a life-long degenerative bone disease.
Charlie Gard is not only afflicted with a congenital and fatal disease, but Charlie is also a child of God, just as we are all – able-bodied or with our imperfections -- children of God. In today’s Gospel reading from the book of Mark, we find the apostles trying to limit access to Jesus, particularly from those who were bringing their children to Jesus for a blessing. Jesus said to his disciples, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.”
What do we think Jesus meant in this Gospel passage? Children, especially the newborn, are absolutely dependent on their parents for every facet of life. There is not one thing an infant can do to perpetuate his own existence for more than one day without his parents’ help. And yet, according to Jesus, children are the best able to teach us about God’s Kingdom on Earth.
As in other cases where Jesus speaks about the “least” members of society, including women, orphans, the disabled, and the strangers, Jesus teaches us that the innocence, dependence, and trust of children, are the qualities that open the doors to His Kingdom. Children bring into this world no qualifications, no earnings, no reputation, no status, no ownership of any property, and absolutely no claims to accomplishment. Since children have no claims to greatness whatsoever, they can only hope in the love of their parents or their caregivers.
If we, as adults, want to enter the Kingdom of God, it matters little what our so-called earthly accomplishments are, and it matters less how long our resume is. To be Kingdom-ready means that one must forfeit one’s list of human accomplishments and place your trust, wholeheartedly, in the hands of God.
Charlie Gard, who has an innocent and pure heart despite his fatal illness, will be admitted directly to God’s Kingdom after his time on this earth has ended. Can we say the same for ourselves?
I would like to conclude today with a double image of captivity. After arriving in Jerusalem to celebrate the Passover, Jesus was arrested and remanded to the custody of the Roman Empire. Since his birth in August 2016, Charlie Gard has remained in the custody of the British government. Jesus was tried by both Roman and Hebrew courts and condemned to death. Charlie Gard’s case was tried before three British courts and the European Court of Human Rights – and Charlie was effectively given a death sentence. The inevitability of death is apparent in both cases, but, given even the slimmest possibility of a successful outcome, shouldn’t Charlie Gard and his parents be given the opportunity to try for one last miracle? As Christians, we believe that Jesus’ death and resurrection is the fundamental miracle underlying our Christian faith. In the case of Charlie Gard, may we all ask God for one more miracle.
Let us pray. For all of God’s children, who see the truth through the eyes of innocence, we ask you Lord to lead us in their ways, so that we may prepare the way for your Kingdom on earth. For little Charlie Gard, who, in his helplessness and dependence, models for us our own helplessness in the face of life and our own dependence on you, O Lord, we pray that your will be done.
And for all those who are differently abled, who face physical and mental challenges, and who cannot even access THIS SANCTUARY to worship you, O Lord, we ask that you meet them in heaven, accepting of all physical and mental challenges, because in our imperfections we reflect the perfection that is you, our loving, saving, and everlasting Lord.
May it be so.