Margaret Hogan, Glenview woman who founded group for children with rare genetic disorder, dead at 55

Whenever her phone rang in the middle of the night, Margaret Hogan would wake up and talk to anguished new parents from as far away as Canada, Mexico and New Zealand, for as long as they needed.

They would ask about their newborn babies, born with rare facial and body deformities. Were they of normal intelligence? What would their lives be like?

Margaret Hogan

Margaret Hogan had been just like them, searching for answers, when her daughter, Bridget Ieronimo, was born in 1989 with a genetic disorder documented only about 75 times worldwide. Mrs. Hogan’s digging in those pre-Google days connected doctors, surgeons, geneticists and parents of children with Miller Syndrome around the globe.

“She’d reassure her callers, saying, ‘They’re going to go through a lot of surgeries, and there will be pain, but you’re going to be OK,’” said her sister, Beth Atkins. Mrs. Hogan’s daughter, Bridget, is now 26 and administers the Facebook page of The Foundation for Nager and Miller Syndromes, a group Mrs. Hogan founded.

The foundation raises money for genetic research and for parents’ hotel costs when their children have to travel for surgery.

The FNMS also organizes and subsidizes family retreats in different cities that are scrutiny-free respites for children who are often pointed at or excluded.

“There isn’t a dry eye anywhere,” Beth Atkins said. “These children were pointing to each other [as if to say], ‘There’s someone else like me.’”

Margaret Hogan, bottom left, attending a gathering of FNMS families.

The gatherings might include talks by plastic surgeons and geneticists, or presentations on coping with bullying from patients with Miller Syndrome. Through the foundation, Mrs. Hogan paid for children and an accompanying parent to fly to these retreats, her sister said. “They came in from New Zealand, from France, Germany, Poland, Mexico.”

Mrs. Hogan died suddenly May 23 at her Glenview home. She was 55.

“Our world is a much better place because Margaret was there to blaze a new trail,” the foundation said on its website, http://www.fnms.net.

In 1989, when Bridget was born, her mother studied a book of physical anomalies. Then married to her first husband and known as Margaret Ieronimo, Margaret and the physicians spotted a photo of a child who looked similar to her daughter. Babies with Miller Syndrome, also known as postaxial acrofacial dysostosis, typically are missing a portion of their lower eyelids and pinky fingers, and have cleft palates, recessed jaws and limb malformations, according to the foundation. Sometimes the children also have hearing loss and heart problems. With Nager Syndrome, the anomalies are similar, but those children are usually missing thumbs.

“Margaret took a picture of Bridget and wrote to the doctor who wrote this article for this book, Dr. Marvin Miller, and said, ‘Is my baby one of yours?’ He called three days later and he said ‘Yes.’” Miller Syndrome is named after him.

The doctor put Mrs. Hogan in touch with a woman in Utah with two children with Miller Syndrome, Atkins said. That woman reassured her and connected her with another mom in New Zealand.

Bridget’s pediatric surgeon helped Mrs. Hogan write letters to other surgeons throughout the world, asking if they had operated on children with similar traits. That led to the founding of the group.

“I had the great privilege of attending her first fundraiser for her foundation,” Miller said. “A picture of Margaret and her sister at that event sits in my office to constantly remind me of the goodness that committed people do in a troubled world.”

“Every new family that Margaret welcomed into FNMS felt as if they had discovered a long-lost family member,” said DeDe Van Quill, director of the group. “It took the geneticist 24 hours to determine that our son, Jackson, had been born with Miller Syndrome, and he handed us [Mrs. Hogan’s] newsletter and said, ‘This is the best information we have on this rare condition. You should contact this organization.’ We did, and Margaret changed our lives, as she has so many others.”

She was Margaret Troka when she was growing up in the Sauganash neighborhood. She graduated from Regina Dominican High School, which later awarded her its alumni medal. A talented artist, she could replicate paintings, make pottery and craft stained-glass windows. A Beatles fan, Mrs. Hogan started listening to bluegrass artists such as Emmylou Harris after buying a second home near Asheville, North Carolina.

Margaret Hogan founded the Foundation for Nager and Miller Syndromes, two rare genetic disorders, after the birth of her daughter in 1989.

She is also survived by her husband, retired Cook County Circuit Judge Michael J. Hogan; son, Mick Ieronimo; stepchildren, Molly Barnes, Michael J. Hogan Jr. and Timothy Hogan; another sister, Catherine Cerone; and a step-grandchild. Services have been held. Her daughter and Beth Atkins are planning to attend the next FNMS family retreat in New Orleans at the end of June. “We’ve never missed one,” her sister said.