Church Providing Awareness, Support for Latter-day Saint Families Facing Rare Diseases
Contributed By Trent Toone, Deseret News staff writer
- The Church wants families experiencing rare disease to know they are cared for and needed.
- Two rare-disease resources include the EveryLife Foundation and Global Genes.
“I hope we can better comprehend what these families are going through and help them feel that they are not alone. They are loved, valued, and needed in the Church.” —Sister Joy D. Jones, Primary General President
In March 2017, 12-year-old Ethan Bruns stood in front of about 300 people at the Utah Rare Disease Symposium and shared his story.
At age 8, what his parents initially thought was the stomach flu almost shut down his kidneys, turned his skin yellow, and left him unable to move on a hospital bed.
Eventually doctors ruled out a foodborne illness related to E. coli, and Ethan Bruns was diagnosed with Atypical Hemolytic-Uremic Syndrome, a rare immune deficiency disease.
Years later, although his condition has dramatically changed all aspects of life for his family and the road hasn’t been easy, Ethan and his family have survived.
Even though he goes to McKay-Dee Hospital in Ogden, Utah, every two weeks to receive one of the most expensive drugs in the world, the experience has opened unexpected doors and welcomed new friendships. Now the Bruns attend rare disease conferences and share hope. Ethan’s dream is to become a geneticist so he can help find cures for his other buddies who have rare diseases.
“You can achieve anything, even if you have a rare disease,” Bruns told his audience in 2017.
More than 7,000 types of rare and genetic diseases are affecting one in 10 Americans and an estimated 350 million people worldwide, according to research by Global Genes, a nonprofit rare disease advocacy organization.
Because of individuals and families like the Bruns who live with rare diseases, The Church of Jesus Christ of Latter-day Saints is calling attention to this cause and lending its support, said Douglas G. Richens, a senior manager in the Church’s Priesthood and Family Department.
“We’ve desired to reach out and make sure that those members feel that they belong, that they are understood, that leaders are in a position to minister effectively to their needs,” Richens said. “What these families go through is complex. The mental energy they go through just to explain their condition, their situation, over and over, let alone deal with it, let alone pay for it, and everything else. … Church leaders are aware of this.”
Sister Joy D. Jones, Primary General President, acknowledged the need to help these families and support the rare disease community.
“The early stages of discovering a rare disease include shock and confusion,” Sister Jones said. “The rare disease community works together to provide support for each other, but I hope we can all recognize their challenges and wrap our arms around them. I hope we can better comprehend what these families are going through and help them feel that they are not alone. They are loved, valued, and needed in the Church.”
Families in which children have rare diseases can often become exhausted from the rigors of care and can slip through the cracks from congregations, Sister Jones noted. “Surely they must feel very isolated.”
Sister Jones expressed her hope that every Primary is a welcoming place for every child. “Each child is loved and needed in Primary. Each child is known and loved by our Heavenly Father. We can learn much from the faith, strength, and fortitude of these children and families,” she said.
Sister Linda S. Reeves, who served as the Second Counselor in the Relief Society General Presidency from 2012 to 2017, spoke of her husband’s battle with a rare disease in October 2012 general conference.
“Many years ago my husband became very ill with a rare disease,” Sister Reeves said. “As the weeks went by and the sicker he became, the more I became convinced that he was dying. I told no one of my fears. We had a large, young family and a loving, eternal marriage, and the thought of losing my husband and raising my children by myself filled me with loneliness, despair, and even anger. I am ashamed to say that I pulled away from my Heavenly Father. For days I quit praying; I quit planning; I cried. I finally came to the realization that I could not do this alone.”
Two of the best resources in the rare-disease community include the EveryLife Foundation and Global Genes, Richens said.
Both organizations are dedicated to finding rare disease treatments, advocacy, and educating the community. They also provide resources that help families navigate the medical system.
Lisa Schill, the event development consultant for EveryLife and a mother with her own rare-disease child, was recently in Utah as part of the organization’s Rare on the Road tour. The Church’s involvement is “wonderful news” and a “good connection to make,” Schill said.
“That’s what it’s all about—sharing and collaborating and helping each other and coming together a community to help patients and families,” Schill said. “I think it’s wonderful that the [Church] is going to be offering more resources to rare-disease families because every life matters.”
Learning of the Church’s support for families with a rare disease was welcome news to Ethan and his parents, Ryan and Anne Bruns, Latter-day Saints living in Plain City, Utah.
Anne Bruns talks about her work and what she still wants to accomplish into the research of her son’s disease, Atypical Hemolytic-Uremic Syndrome, at her home in Plain City, Utah, on Saturday, August 25, 2018. Photo by Adam Fondren, Deseret News.
“It’s huge. The Church has this global humanitarian effect that can reach so many people that are feeling isolated,” Anne Bruns said. “There's only so much you can do in a clinic, and a large percentage of it is emotional. I feel like that emotional support is where the Church can really come in and help those that are struggling. I think it’s really exciting.”
Not long after her son’s condition was stabilized, Anne Bruns became involved the AHUS Foundation. She and other Utah mothers of children with rare diseases created Utah Rare as a way to generate awareness and bring together families affected by rare disease in Utah. As a result, the Bruns have developed many deep bonds with other families who can relate to what they’ve been through.
The Bruns’ experience with Ethan has also taught them that all are fighting their own battles and need to know they aren’t alone.
Ethan Bruns, who has a rare disease called Atypical Hemolytic-Uremic Syndrome, and his father, Ryan Bruns, begin grilling kabobs for lunch at their house in Plain City, Utah, on Saturday, August 25, 2018. Photo by Adam Fondren, Deseret News.
“Who would ever think that we’d have these friends that we’ve never actually met in all sorts of countries across the world,” Anne Bruns said. “But we’d do anything for them because we know their struggles and they know ours. It makes the world a lot smaller and shows how compassionate people can be.”
The rare disease experience has given Ryan Bruns a new perspective on service.
“What I’ve learned is that our whole purpose in being here is to serve and love others,” Ryan Bruns said. “It’s not some big, complicated thing. Serving others is what this life is all about.”
The Bruns also feel blessed that Ethan’s situation wasn't worse. It was something they could live with. The slender, smiling teen has never complained about his rare disease. He decided early on that he was going to “roll with it.” He wants to use his experience and knowledge to bless others while finding inspiration in a quote from the 2002 film Spider-Man—“With great power comes great responsibility.”
Ethan Bruns also draws strength from a priesthood blessing he received when he first went into the hospital several years ago.
“Because of the blessing, I knew everything would be OK, and it has turned out OK,” Ethan said. “Heavenly Father is real; He’s looking out for all of us, and He has a plan.”
Sophie Bruns and Ethan Bruns, who has a rare disease called Atypical Hemolytic-Uremic Syndrome, play with homemade slime before lunch at their house in Plain City, Utah, on Saturday, August 25, 2018. Photo by Adam Fondren, Deseret News.