Lessons from Charlie Gard

Archbishop Aquila

After living one week short of a year, Baby Charlie Gard passed on to eternal life on July 28th. His brief life and the court battle over his treatment should move us to pray for him and his family and to reflect on the lessons it holds for the ongoing health care debate in our own country.

For those of you who are unfamiliar with the story of Charlie Gard, he was an almost one-year-old English boy with a rare genetic disorder called mitochondrial DNA depletion syndrome. The disease damaged his brain and left him unable to move his arms or legs. Over the last few months, Charlie’s parents had to appeal to a series of courts to prevent his doctors from removing him from a ventilator and to allow their child to be admitted to an experimental clinical trial in the U.S.

In Britain, if the parents of a minor or the patient himself disagrees with the doctors about treatment, the disagreement is settled in the court system. This means that the patient is at the mercy of a judge. Charlie’s mother, Connie Yates, described how this resulted in the denial of their request to bring their son home for his final days. She told Sky News, “We just want some peace with our son, no hospital, no lawyers, no courts, no media, just quality time with Charlie away from everything to say goodbye to him in the most loving way. We’ve had no control over our son’s life and no control over our son’s death.”

When Pope Francis heard about the battle over Charlie’s care, he said that he hoped his parents’ wish to “accompany and care for their child” would be respected to the end. Unfortunately, as time and the court battles went on, the damage to his body reached a point that meant the clinical trial in the U.S. was no longer a possibility. And in the end, Charlie was not allowed to go home to die. Instead, the judge ruled that he would be taken to a hospice, where he would be removed from a ventilator and subsequently pass away. Much to the dismay of his parents, this is what happened on July 28th.

As we consider the future of health care in our country and as some politicians call for a government-run system, we should not gloss over the tendency for such systems to usurp the rights of parents to determine what is in their child’s best interest, and for that matter, the rights of patients to manage their own health care.

Another danger is the demand by the government for immoral procedures, such as the Health and Human Services contraception mandate that targeted the Little Sisters of the Poor and others. All too often, one sees state-run health systems make decisions based on a drive for efficiency, a patient’s so-called “quality of life,” or along ideological lines, rather than seeking to uphold patients’ inherent dignity as a human person. In the “throwaway culture” in which we live, our hearts are hardened against caring for those with disabilities and the dying.

Reform efforts for our health system should respect the rights of patients and parents to make decisions about their own medical treatment, the conscience rights of medical professionals and the principal of subsidiarity. The story of Charlie Gard makes the consequences of doing otherwise clear.

While Congress considers repealing the Affordable Care Act, it should also keep in mind that any replacement should treat health care not as a privilege, but a right founded upon the right to life and the God-given dignity of every person. The level of care we extend to the poor and sick should not be curtailed because of their financial means, health or the decisions of hospital officials.

The plight of so many people who are sick and in need of care reminds me of Emma Lazarus’ poem “The Great Colossus,” which can be found in the pedestal of the Statue of Liberty. Lazarus was a Portuguese Sephardic Jew who spent much of her time helping poor and often sick refugees as they arrived at Ward Island near New York City. She wrote, “Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore. Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!”

I pray that in the coming months our lawmakers will strive to craft legislation that places the dignity of the person at the center of health care, so that our country will continue to care for the sick and downtrodden. Let us also pray for Charlie’s family and all those who are facing medical trials. May our Father grant them peace, wisdom and fortitude.

Charlie Gard. Photo: Facebook, Charlie Gard’s Fight.

COMING UP: Machebeuf basketball star traded success playing hoops for a solitary life of prayer

Sign up for a digital subscription to Denver Catholic!

Shelly Pennefather led the Bishop Machebeuf High School girls’ basketball team to victory in every game she played in. It was not surprising to her friends and classmates that she would go on to play college ball for Villanova and then play professionally in Japan. It was not even surprising that she would have a religious vocation.

What was surprising was the order she chose. In 1991, Shelly Pennefather drove to Alexandria, Va., where she entered the Monastery of the Poor Clares. She would become a cloistered nun, living a radical life that included going barefoot out of penance and poverty and praying all of the hours of the Divine Office, even at 12:30 a.m.

This also meant she would not see her family except for twice a year from behind a transparent screen. She would not hug them until 25 years after her profession.

“I was shocked that she chose a cloistered order,” said Annie Mcbournie, graduate of Machebeuf in 1984 and a friend of Pennefather’s. “I was not at all shocked that she chose a vocation.”

Her story was recently featured on ESPN, who recounted how Pennefather gave up being the highest-paid women’s basketball player in the world in 1991 to live a life in service to the Lord as a Poor Clare.

Pennefather took the name Sister Rose Marie of the Queen of Angels. This past June, Sister Rose Marie celebrated her 25th anniversary of her solemn profession: the long-awaited moment to greet her family from outside the screen, not to happen again for another 25 years.

Villanova teammates, friends, Machebeuf classmates, and family were all in attendance. She hugged her 78-year-old mom for what will probably be the last time.

Mcbournie was not able to make it but will visit Sister Rose Marie this fall. Since she’s kept up with her via letters, she is permitted to visit the monastery.

Pennefather attended Bishop Machebeuf High School in Denver from 1980 to 1983 before transferring for her senior year due to her dad’s military job. She left Machebeuf with a 70-0 record.

“Her entire high school career, she never lost a basketball game,” Mcbournie said.

Mcbournie was a cheerleader and friend of Sister Rose Marie in high school, but a deeper friendship began 10 years after graduation. Sister Rose Marie’s brother Dick called Mcbournie before World Youth Day in Denver in 1993 since Mcbournie was still in the area.

Sister Rose Marie had just joined the Poor Clares and Dick and McBournie met up and spoke about the mourning process the family was going through, McBournie said. Dick mentioned to her that they could write Sister Rose Marie as many letters as they wanted, and one day a year, on the Feast of the Epiphany, she could write back.

Shelly Pennefather, pictured here in this photo from the Archdiocese of Denver archives, always exuded a deep spiritual life, her former Bishop Machebeuf classmates said. (Photo by James Baca)

“From that year on, I have been writing her every year,” McBournie said. She gives Sister Rose Marie updates on life, pictures from their high school reunions, and prayer requests.

“I have witnessed her journey through these letters,” McBournie said.

When Sister Rose Marie’s dad passed away shortly after entering, she was not able to leave the monastery to go to the funeral. McBournie saw how difficult these sacrifices were for her, especially in the early years of her vocation. But the letters show Sister Rose Marie’s joy.

“The last 5 to 10 years, I could just see her say, ‘I’m so blessed to be able to do this’,” McBournie said. “She’s so joyful.”

A fellow Machebeuf classmate asked McBournie for Sister Rose Marie’s address in order to have a little fun. He sent her a $20 bill with a note saying he thought she could use a smoke and a bottle of wine.

Sister Rose Marie did not miss a beat and in her yearly letter, she responded, “I bought incense, and I drank from the chalice,” McBournie recounted.

Shelly Pennefather (#15) had a 70-0 record playing basketball for Bishop Machebeuf in the 1980s, and went on to play for Villanova and then professionally in Japan. (Photo courtesy of Villanova Athletics)

But this letter sparked a friendship. This classmate has continued to write letters and even attended the 25-anniversary jubilee.

“Her letters are still hilarious, still very sarcastic,” McBournie said.

She remembers Sister Rose Marie being reserved and quiet in high school, focused more on school and basketball than anything else. Her father was in the military and the family was very disciplined, but they had a good sense of humor and quick wit, McBournie said.
“Her spirituality permeated her existence from the time she was young,” McBournie said.

David Dominguez was a few years ahead of Sister Rose Marie at Machebeuf but remembers her discipline and her talent. He called himself her cheerleader.’

“If it was really tight, we would start yelling, ‘Shelly, Shelly!’” Dominguez said. “It was one of my favorite cheers.”

Dominguez exercised at the Air Force base gym where Sister Rose Marie would train and play basketball with her dad and brother.

“I knew she had incredible skills,” Dominguez said. “It was kind of magical to watch.”

Sister Rose Marie recently celebrated the 25th anniversary of her profession of vows with the Poor Clares. She was able to hug her friends and family for the first time in 25 years. ESPN was there to cover the occasion. (Photo courtesy of Mary Beth Bonacci)

Dominguez also knew she was different.

“She was living for a different purpose than everyone else,” he said.

Sister Rose Marie’s devotion and personality remain the same, though she has traded in her jersey for a habit.
Although Sister Rose Marie can only write one letter a year, and can seldom have visitors, her friendship and influence reach far beyond the monastery walls.

Mcbournie said that their yearly letters have brought them even closer than they were in high school.

“I look forward to her letter every year,” Mcbournie said.