Extra chromosome = extraordinarily blessed journey

When Denver Legates Michaelann and Curtis Martin, co-founders of the Fellowship of Catholic University Students, learned their newborn son Michael had Down syndrome, the diagnosis was unexpected. Medical staff quickly prepared them for the worst, describing possible disabilities and complications.

“It was really emotional,” Michaelann Martin said. “They put all that on you at the very beginning. It took some peers and a lot of prayer to put it back in God’s hands and trust Him with Michael’s life and health. We went from there.”

Down syndrome is a chromosome disorder. The lifelong condition is associated with intellectual and developmental problems, and distinctive facial characteristics. When the Martins learned that the first medical center in the United States of the famed Jerome Lejeune Foundation in France was opening in spring 2021 near Denver and would be offering holistic consultations for people with Down syndrome, they were elated at the prospect of accessing research-based care that aligns with their Catholic beliefs.

“Michael will be the first patient,” Michaelann Martin recalled blurting out in response to the news. Michael, now 7, is the youngest of the Martin’s nine children.

A Catholic approach

An admirer of Jerome Lejeune, the French geneticistpediatrician and devout Catholic who discovered the cause of Down syndrome, Martin was delighted that the Lejeune Foundation would partner with and operate the center out of the nonprofit clinic Bella Health & Wellness, where she is a patient and serves on the board.

The Jerome Lejeune Medical Center opened on March 21, World Down Syndrome Day. The Martins are among the seven families with a total of 10 patients that comprise the pilot program. Currently limited to treating children with Down syndrome, over time the center will also treat adults. Eventually, it plans to offer lifelong multidisciplinary care.

“We were drawn to Denver, we believe, by the Holy Spirit,” said Keith Mason, executive director of the Jerome Lejeune Foundation USA. “Bella has the same ethos of Lejeune in that we focus on the dignity of the human person first.”

Dede Chism, Bella CEO and co-founder, affirmed that the two entities share a goal of offering Christ-centered health care that addresses the whole person—body, mind, and soul. She also wanted to help the Lejeune Foundation in their work protecting medically vulnerable populations.

“That some 67 percent of prenatally diagnosed Down syndrome babies in the United States are being aborted is tragic,” Chism said. “Anyone who knows someone with Down syndrome knows they make our world a better place. We need their beauty, truth, and good.”

Father of modern genetics’ Catholic influence

In 1958, Jerome Lejeune discovered that an extra chromosome causes Down syndrome. He then spent his life searching for a cure, providing care and advocating for the medically vulnerable. Fervently opposed to prenatal diagnosis for the purpose of abortion, Lejeune famously said: “Hate the disease, love the patient—that is the practice of medicine.”

Considered “the father of modern genetics,” Lejeune served as a member of the Vatican’s Pontifical Academy of Sciences starting in 1974 and became the founding president of the Pontifical Academy for Life in 1994. He died just weeks later of lung cancer. Lejeune was declared “Venerable” by the Vatican this year on Jan. 21, recognizing his heroic virtue and furthering his canonization cause. His work continues through the Lejeune Foundation, which runs a world-class medical center in Paris—the Jerome Lejeune Institute—specializing in Down syndrome.

Although Denver offers quality Down syndrome resources through secular entities, the Jerome Lejeune Medical Center does the same from a Catholic worldview that upholds the sanctity and dignity of human life from conception to natural death, organizers said.

The new center also draws on decades of experience and research in France to provide medical care tailored exclusively for people with Down syndrome, who typically have increased risk of health problems and may present signs and symptoms differently. Unfortunately, the average medical professional is not trained to address their unique health needs, according to the Lejeune Foundation.

Faithful research and care

“In Paris we have the largest biobank of DNA samples in the world of people with genetic disorders,” Mason said. “From that biobank we fund and we employ research projects all over the world. The data we gather from those projects is what we institute directly into care for these patients.”

Getting specialized medical care that affirms the family’s moral values is a huge benefit the new center provides, Martin said, noting that secular entities often promote sterilization and contraception for people with Down syndrome, contrary to Catholic teaching. The attention Michael and the family have received at the new center is also aiding their caregiving, Martin said.

“It’s been amazing—the questions, insights, what they are looking for to improve Michael’s quality of care that a regular doctor might not check for … and that I might not even be aware to ask,” she said. “When I took Michael in with multiple siblings for his visit, Lejeune’s Doctor Herve Walti, who was Zooming in, was including the other children in the conversation to get a sense of Michael as a person and what they could do to help him with motor skills and overall quality of life.”

Martin likened the experience, in which Bella’s Dr. Sarah Hodack was conducting the in-person visit, to being part of a “master class” with doctors whose work is “a mission of love.”

“We had the two doctors and their full attention,” Martin said. “By the time we left I had some homework and extra testing to do. It was very thorough.”

The new center has also blessed the family with community.

“Finding community is huge and that’s what Lejeune has offered here,” Martin said. “Community for those families who are looking for faithful companions to walk this walk with unique challenges. It’s so great to know you’re not alone.”

For parents who may fear the challenge of rearing a child with Down syndrome, Martin and Chism advised seeking out the best medical care available. If that entity isn’t nearby, they added, be aware that it may be accessible via telemedicine or, if possible, by traveling. (The Martins travel out of state annually for health care for a young adult son with autism.)

Community support – and trust in God

They also recommend connecting with a community (ideally faith-based)—in person or via social media—for people who have family members with Down syndrome.

“You may not need that community now,” Chism said, “but somebody else may need you now. Bring the gifts you have, the lessons you’ve learned, be a part of sharing that.”

Mason, who has seven children, including a 2-year-old daughter with Down syndrome, echoed Martin and Chism in asserting that having a family member with the condition is a tremendous gift and blessing.

“The additional care they need is a small price to pay for the amount of joy and life they bring. It’s a unique and blessed journey you’ve been called to and chosen for,” Mason said. “Jerome Lejeune said that the genetic code is like a sentence God is speaking to us. People with Down syndrome aren’t lacking anything, they have something extra—God is trying to communicate something extra to us.”

“Although it was scary in the beginning, it’s been nothing but joy. God knew our family needed Michael,” Martin said. “The evil one wants us to be afraid. But when you trust God’s loving plan for your family, for your children, you realize He’s got this.”

ROXANNE KING is a Legatus magazine contributing writer from Denver.