Vatican’s Pontifical Hero Award

MORRISTOWN  In 2000 at the dawn of the new millennium, the Wilkey family of Assumption Parish here had only started to wake up to a gradually unfolding — and bizarre — medical nightmare. Over the next few years, Liz Wilkey watched with great distress as all three for her daughters got diagnosed — and then started their struggles — with various autoimmune and rheumatoid diseases in their pre-teens through their early 20s.

Like any loving mother, Wilkey wished that she could take on her daughters’ chronic conditions — including lupus, a systemic autoimmune disease that happens when the body’s immune system attacks its own organs and tissues — to help alleviate their considerable suffering. Perhaps she might have been more careful with what to wish for. That’s because in 2010, Wilkey was diagnosed with Sjögren’s Syndrome along with rheumatoid arthritis, antiphospholipid antibody syndrome, lupus and small fiber peripheral neuropathy. Her unwelcome news made the family’s recent history of medical issues even more difficult — and unusual — as Wilkey explained in her presentation at the 4th International Unite to Cure 2018 Conference in Vatican City, April 26-28.

“When I was first diagnosed, I couldn’t understand why my body was attacking its own cells. But somehow, I landed on a sense of gratitude for all that my body is still doing for me. No one escapes suffering in this world. We must transform it into something beneficial. Combining traditional Western medicine with prayer, meditation and gratitude and other Eastern modalities has allowed me to become more thankful, compassionate, aware and alive than I was before I became ill,” said Wilkey in a short video presentation before she and her daughters — Kaitlyn, 30; Megan, 27; and Leah, 26 — spoke about living with and trying to find relief from their painful conditions during a 15-minute panel discussion at the global conference, attended by 400 people. “As of yet, there have been no life-changing therapies but many therapies have helped. The thought of using adult stem cell therapy to reverse autoimmunity is exciting to me and promising for the future of my daughters. My family’s journey with autoimmunity may not be typical, but we know that we are not alone. We have each other. We have hope and we have promise for the future,” she said.

During Unite to Cure, the Wilkeys spread some hope by sharing their story of adversity and illness during their panel discussion, moderated by U.S. TV personality and journalist Meredith Vieira. They had the good fortune of attending the conference, because in April, Liz won a social media contest, Stories of Hope, held by the CURA Foundation, one of the conference sponsors — good news that the Wilkeys learned, during an appearance on the “Dr. Oz Show” on April 4. At the close of the conference, Cardinal Gianfranco Ravasi, president of the Vatican’s Pontifical Council for Culture, another conference sponsor, bestowed upon Wilkey and her daughters the Pontifical Hero Award for Courage.

“I was particularly struck by Cardinal Ravasi’s opening remarks to the conference in which he said, ‘The Spirit is like a thread that links us to God.’ In my case, that thread has grown to become my lifeline. It is only my trust in God that allows me to accept the uncertainties which come from experiencing chronic illness myself or — worse yet — watching our children deal with them,” said Wilkey, who along with her daughters, participated in the panel discussion with her husband, Michael, who remains free of autoimmune and rheumatoid diseases.

Also sponsored by the Stem for Life Foundation, Unite to Cure gave the Wilkeys more hope through bringing together the world’s foremost scientists, physicians, researchers, religious leaders, philanthropists, journalists and giants in the healthcare industry. They examined how science, technology and 21st century medicine will impact society and culture. Many panel discussions explored future treatments and possible cures of rare, untreatable and presently incurable diseases, Wilkey said.

“My personal takeaway from this conference is one of true hope,” Wilkey, former parish coordinator of Assumption for 10 years, wrote on her blog, “Drying My Tears” at http://mysjogrenslife.blogspot.com. “For years we have been told that there is no cure for the various diseases that my family suffers from. Yet now I find myself imagining a day in the future when my daughters will not suffer from joint pain every day of their lives,” she said.

During the Unite to Cure, Wilkey got a second-row seat to an address by Pope Francis — “a dream come true,” she said. In it, the pontiff suggested a two-fold path for the medical and scientific community to follow in the pursuit of cures: one with “an open interdisciplinary approach that engages multiple experts and institutions,” which “can lead to a reciprocal exchange of knowledge” and another “made up of concrete actions on behalf of those who suffer.” Both directions “call for a convergence of efforts and ideas that engage various communities: scientists and physicians, patients, families, ethicists, cultural and religious leaders, philanthropists, and representatives of governments and business,” he said.

Twice during the conference, Wilkey encountered the Pope in the lobby of Santa Marta, the hotel where he lives and where she stayed. One time, she came face-to-face with him in the lobby, as he passed by. The Pontiff smiled and waved his hand and she bowed. “My heart melted,” Wilkey said.

It was in 2014 that Wilkey retired from Assumption, as the symptoms of her diseases got more difficult to manage. One of her conditions is Sjogren’s Disease, which attacks tear and saliva glands, resulting in a parched, cotton-like mouth and dry, gritty and itchy eyes; causes extreme fatigue, which prevented her from attending the entire conference; and, like the lupus, could end up attacking organs and joints. Also, she developed painful small fiber neuropathy in her feet, hands, arms and legs and suffers from a blood clotting disorder, lupus and rheumatoid arthritis, said Wilkey, who also wrote a book, “Drying My Tears: One Family’s Journey with Autoimmunity,” available at booksellers, such as Amazon.com.

Over the years, Wilkey’s daughters Kaitlyn, a medical student; Megan, a school psychologist; and Leah, a research assistant at the Children’s Hospital of Philadelphia, have suffered various autoimmune and rheumatoid diseases. They include spondyloarthritis, which attacks joints; Hashimoto’s Disease, which affects the thyroid; Guillain-Barre Disease, which attacks the peripheral nervous system; pernicious anemia, which destroys red blood cells or causes a loss of blood; alopecia areata, which causes hair loss; and undifferentiated connective tissue disease, which attacks healthy tissue. Also, Wilkey has two brothers who suffer from autoimmune conditions, she has written.

During their panel discussion at Unite to Cure, Kaitlyn spoke about changing her diet to help manage her diseases. Leah emphasized that the patient, not the doctor, bears the ultimate “responsibility to figure out the best treatment options.” Wilkey spoke about living with gratitude. Also, Vieira said Wilkey’s story “inspires us with courage.”

Also admiring Wilkey’s courage has been Msgr. John Hart, Assumption’s pastor, who called her and her family “faith-filled parishioners.”

“Faith has helped Liz persevere, live in hope and be united with the suffering of Jesus on the Cross,” Msgr. Hart said. “The Pontifical Hero Award is so well deserved. It’s also a sign of hope and concern by the Holy Father and the Vatican,” he said.