With their son’s life at stake, Ken and Ann Slaw made things happen.
The world of Ken and Ann Slaw changed forever in 1996 on the day their four-year-old son Andrew slammed his hand in the sliding door—and felt little pain.
“Andrew showed no reaction to the pain or any surprise,” says Ken Slaw, a 1979 LAS alumnus in psychology. “He should have been screaming.”
This incident led the Slaws to Rush St. Luke’s Hospital in Chicago, where Andrew saw Dr. Peter Heydemann, a pediatric neurologist. In no time, Dr. Heydemann determined that Andrew had Familial Dysautonomia (FD)—a truly amazing diagnostic feat considering the rarity of this genetic disease. Only an estimated 300 people in the world have it.
The reason Dr. Heydemann could identify the disease so quickly was that he had diagnosed his first case of FD only two weeks earlier, so he knew exactly what he was looking at. Equally astounding, the Slaws discovered that another FD patient just happened to live a mile from their home in Buffalo Grove.
“There are 300 on the planet with this disease, and two live within a mile of each other. It was one of those things when everything in the universe came together,” Slaw says. But even though they were elated to have a diagnosis with which to work, they were horrified when they discovered what was in store for Andrew and their family. Their son was not expected to live beyond the age of 10.
“It was the longest night of our lives,” he says.
Although the diagnosis of FD did not come until Andrew was four years old, the Slaws knew something was wrong from the very beginning in the delivery room. Andrew was born in 1992, and challenges emerged in the first hours, when his heart rate would mysteriously disappear during labor contractions.
With a pediatric intensive care crew on hand, ready for anything, “Andrew came into the world exhausted and a bit blue from poor oxygenation, but intensely alert and curious,” Slaw says. “You almost got the sense that if he could have, he would have raised his hand and asked a question or two. His birth was all at once a mystery, a roller coaster ride, and an overwhelming joy.”
For the first four years of his life, Andrew displayed “grit and creativity as he played cat and mouse with his developmental milestones,” he adds. Andrew was consistently six months behind the physical milestones but far ahead in verbal development. He also showed perplexing symptoms, such as passing out if he laughed too hard.
Then came the hand-slamming incident, and the mystery illness was unmasked. However, many mysteries still remained, such as the cause and treatment of this rare disease. So Ken and his wife, Ann, who is also an LAS alum in psychology, hit the books and became involved in an FD Foundation, which supported research on the disease.
But then the bottom fell out.
For the next few years, Andrew regularly went into “autonomic crisis,” in which his blood pressure and heart rate soared, and other systems crashed. Between birth and age 10, Andrew was hospitalized 30 times for life-threatening autonomic crises, with one hospital stay lasting over six months.
“After a couple more years, we became frustrated with the lack of urgency and the slow bureaucratic pace of research,” Slaw says. In fact, they did not think Andrew would survive long enough for answers to arise from current research, so Ken and Ann took action. Ann gave up her law practice so she could run a new foundation that they created—the Familial Dysautonomia NOW Foundation, or FD NOW (fdnow.org).
Ken, meanwhile, used all of the medical connections he could from his job with the American Academy of Pediatrics (AAP). At AAP, he helped to launch successful programs like the Neonatal Resuscitation Program that has saved millions of lives of newborns struggling in the first hours of life. This program, which set resuscitation standards in 34 countries, hit close to home since their own son faced the same kind of challenges at birth and beyond.
Ken says he and Ann see themselves as “opportunity catalysts” who try to make positive things happen no matter what challenges they face. FD NOW became their catalyst for action, bringing together committed researchers and many parents of FD children.
Over the past 13 years, the foundation has raised roughly $3 million and funded the research of Fordham University’s Berish Rubin, who went on to pinpoint the gene behind FD. Rubin also found the root cause of FD—the failure of the body to create the critical IKAP protein.
“Because of the lack of production of this protein, children are born with only half of the functional neurons in their autonomic nervous system,” Slaw points out. Children with FD also have low levels of a neurotransmitter that “basically swims around in your bloodstream collecting all of the garbage byproducts of our metabolism.”
As a result, those with FD are more likely to have dangerous reactions from toxins building up in their bloodstream.
It sounds dire, but knowing the cause led to treatment ideas—primarily changes in diet. The Slaws discovered that Andrew had to avoid food that is fermented, aged, smoked, and highly processed. Instead, he had to eat fresh food and take supplements. Thanks to such treatments, 21-year-old Andrew has joined his sister Emily in college, and he experiences autonomic crisis symptoms only on very rare occasions.
With so much focus on Andrew’s condition over the years, Slaw says the family had little opportunity for vacations, which was what made the trip to Disney World so special when Andrew was age seven.
The trip came through the Make-a-Wish Foundation “during some very dark days, and it was the first time we were able to get away together as a family,” Slaw says. “It was a profoundly life-changing experience. After all of the time battling, it was like the first ray of light that we had in a long time.”
Desiring that other families could experience the positive power of a wish, Slaw became a leader in the Make-a-Wish Foundation, both nationally and statewide. He even served two years as chairman of the board of the Make-a-Wish Foundation in Illinois.
Today, their son Andrew still has plenty of wishes to fulfill. According to Slaw, Andrew hopes to merge his love for art and comedy through animation, and he “continues to move forward with humor and a positive attitude. Andrew says his FD is just a nuisance he has to deal with, and that everybody has got something to deal with.
“He is, in every sense of the word, remarkable,” Slaw adds. “Whatever I have accomplished in my life and career pales in comparison to what he has endured—and overcome.”
EDITOR’S NOTE: Because of Ken Slaw’s work with FD NOW, the Make-a-Wish Foundation, and the AAP, he was recently given the 2013 LAS Humanitarian of the Year Award.
By Doug Peterson