A family's fate

Life isn't fair, and the proof is Rose Jackowski.Her son Danny suffers from Huntington's disease, a rare and incurable neurological disease that ravages his mind and robs him of the most productive years of his life.On a bad day, she can barely muster the energy to sweep her kitchen floor.On other days, Rose will sit with her son for an hour or two at his nursing home. Maybe he'll carry the soap as they walk down the hall to the washing machine. He might ask to listen to one of the heavy-metal CDs stacked next to his sink.But don't call those the good days."There are no good days," says Rose, 68, who lives in Schaumburg.Huntington's disease is genetic; Danny got his faulty gene from his father, Frank Jackowski, who died when Danny was 12. The disease is a deadly coin flip; a parent with Huntington's has a 50 percent chance of passing the gene to his offspring.Danny's bad days are more than a tragedy for a 37-year-old man who will live the rest of his days in a nursing home. They're also a reminder of the statistical gamble that confronts the rest of Rose's family.Rose knows the same fate could befall her other two adult children, Cheryl Hinde and Dale Jackowski, or any of her five grandchildren."They're all at risk," she says.Huntington's eats away at the nerves and the brain, causing total mental and physical deterioration over a 12- to 15-year period. People with Huntington's eventually need full-time care. Rose knows that well; she spent a decade of her life in that role already.It's grim d#233;j#224; vu watching as Danny slowly loses motor control. When he walks, his limbs jerk in unanticipated directions. When he speaks, his sentences are short and his words muddled. All his food must be soft and thick or he'll choke. He takes medication for depression.While drugs can alleviate some of the symptoms of Huntington's disease, it is always fatal. Suicide rates are high. Within five years of developing symptoms, most people quit work. Eventually, people with Huntington's disease die of illnesses like pneumonia, caused by food or liquids that slip into the lungs.Scientists are searching for effective treatments, but it's like looking for the proverbial needle in a haystack of possibilities -- or, as one researcher put it, a particular piece of hay in a haystack. Discovering the gene is a long way from developing a cure."Right now, I have no hope because there is no cure," Rose says. "It's been 20 years since my husband had it. They found the gene, but that's it. It's not going to be in my lifetime."Troubling signsIn this family, everyday mishaps can become signs of genetic destiny. And by the time Danny reached his mid- 20s, the clues started stacking up.On summer camping trips to Montello, Wis., Danny's fishing line kept getting caught in the trees. He couldn't balance himself on the WaveRunner, recalls Cheryl's husband, Bill Hinde.Dale noticed his little brother develop an eye tic, just like his dad. The wise-cracking, funny kid seemed tired more often, and the former athlete could hardly throw a baseball.The problems cropped up at home, too. Danny had several car accidents. One day Rose Jackowski visited Danny's condominium in Rosemont and found chaos."It was a pigsty, and he didn't know what to do," she said. "He was paying bills late, he wasn't aware of dates -- checks were bouncing. He was having little run-ins with his car, sideswipes. That's how I knew."Huntington's had already sent Danny's life into a tailspin. His hands and limbs had started to twitch in the movements that earned the disease its original name, "Huntington's chorea," from the Greek "to dance."Rose had seen it before. She didn't need a doctor's diagnosis."I diagnosed him. I had to tell him," she said. "He just looked at me, and I hugged him and cried. Maybe deep down he knew something was wrong with him."A difficult diagnosisLapses in judgment led Danny to get fired from his job at a local public works department. Without a job, Danny lost his health insurance, and with a Huntington's diagnosis he became uninsurable. His attempts to find work doing manual labor were rejected."Every time he applied, they saw there was something wrong with him," Rose said. "It was really pulling down his spirits. I finally had to tell him to stop it. Face the fact you're not going to work any more."Danny qualified for free care at then-Cook County Hospital, now rebuilt as John H. Stroger Jr. Hospital. His doctors prescribed Zyprexa, a medication to calm Danny's movements, and Prozac for his mood swings. The drugs helped. Danny kept his condo, but had to relinquish his driver's license. Rose helped with his finances and household chores.Soon after his diagnosis, Danny adopted a yellow Labrador named Luke and signed up for obedience lessons.After a few sessions, the teacher approached Rose and told her Danny didn't understand the instructions. Rose would have to sit in on class. Luke had become another of Rose's mounting responsibilities.Most of Danny's care fell to Rose. At home, Danny needed help eating. As he lost control of his throat muscles, he had difficulty swallowing and often choked. Rose cut all his food into tiny pieces. He needed help to take a shower. Rose made him quit smoking because Danny couldn't hold the cigarettes steady. He was depressed."All he wanted to do was eat and watch TV," Rose said.Rose hadn't had time to attend support groups when her husband was sick. Now she did. While the support and information were helpful, the stories were horrible.She heard about a woman's daughter who hung herself after she learned she carried the Huntington's gene. A man talked about how his wife and daughter were diagnosed at the same time; the daughter went into a nursing home and refused to eat, and she died of malnutrition."She starved herself, because she knew what was going to happen to her," Rose said.Secret inheritanceSigns of Huntington's had surfaced in previous generations. Rose remembers the odd, jerky movements when her future mother-in-law raked leaves in front of her home. It didn't register as anything sinister."I had seen his mother was different," Rose said, "but what does a 13-year-old know?"Her mother-in-law eventually moved into a mental hospital, and the family rarely mentioned it. Frank's sister had the same disease, and so did two of his aunts. His uncle avoided the abnormal gene and now is in his 80s, living in Florida.Rose wishes her in-laws had been more open about the disease; instead she was blindsided.Rose Wasik was 13 when she met Frank Jackowski at the ice-skating rink. He was kind and sweet. They married when Rose graduated from high school and soon started a family in Schiller Park.Frank Jackowski changed diapers, warmed bottles, drove to baseball games and dance recitals. "He was a good father," Rose remembers, "up until he got sick."After their youngest, Danny, was born in 1970, Frank became withdrawn. He slept more. His hands shook. His mind dimmed, as if Rose had outgrown him mentally.One night Rose came home from working the night shift to find her 8-year-old daughter giving the baby a bottle while their father slept."I thought, 'What happened to this man? Why wasn't he paying attention to the baby?'" Rose said. "He just became different. I couldn't put my finger on it. At that time, it was still a secret in the family."She had no inkling of her husband's genetic legacy until Frank's doctor delivered a diagnosis. Danny was about a year old; Frank was 32."That's when my world fell apart," Rose said. Suddenly, Rose realized she'd have to raise three children on her own while caring for an increasingly incapacitated husband. The stress of his illness took a toll on their marriage, and the couple divorced. Frank moved into a nursing home.Dale, the Jackowskis' eldest child, was his dad's most frequent visitor. He'd take his laundry home and bring him spending money for haircuts. Occasionally, he wheeled him across the street to watch a Little League game.When his daughter Cheryl married in 1981, Frank rose from his wheelchair to walk her down the aisle."She kind of held him up," Dale Jackowski remembers. "He did the best he could."Frank Jackowski died the following year, a few months before Dale's wedding. He was 44.Family tiesHuntington's remains a secret disease, even though it's as common as cystic fibrosis and ALS. About 30,000 people in the U.S. have Huntington's, and an estimated 200,000 are at risk of inheriting the disease from a parent."The thing about ALS is Lou Gehrig got it," says Dale Jackowski. "So everyone knows it's Lou Gehrig's disease. The most famous person with Huntington's was Woody Guthrie. And he never played for the Yankees."After her in-laws' secrecy, Rose wants to be more open about Huntington's disease, in hopes that greater awareness will spur research into a cure. But it's a painful subject, one that she and her family rarely address head-on.When a reporter asks if her adult children would be open to an interview, Rose hands out their phone numbers.Then she adds, "I'd love to hear what they say."She's not sure how Cheryl and Dale feel about Huntington's, their risk and their children's risk.Perhaps the most devastating effect of Huntington's disease is its impact on future generations. Some genetic diseases, like cystic fibrosis, require both parents to be a carrier of a defective gene for a child to develop the disease. If the child inherits two copies of the faulty gene, he will have cystic fibrosis.With Huntington's, all it takes is one copy of the defective gene, from either parent. Frank Jackowski had a 50 percent chance of passing his defective gene to each of his three children.Danny Jackowski already lost that lottery. If either Cheryl Hinde or Dale Jackowski inherited their father's faulty gene, they too will eventually develop symptoms. Huntington's has few "maybes." If you have the gene, you will get the disease, and it will eventually kill you.That means their children -- ranging in age from 14 to 22 -- are also at risk. Now they're asking questions.What is Huntington's disease? bull; Huntington's disease arises from a genetic abnormality that causes brain cells to degenerate, leading to uncontrolled movements, loss of intellectual abilities and emotional disturbance. bull; Early symptoms include mood swings, depression and irritability, as well as trouble driving, learning new things and making decisions. bull; A doctor can diagnose Huntington's with a genetic test, medical history, neurological and laboratory tests. Pre-symptomatic testing is available for those at risk of carrying the Huntington's gene. In 1 percent to 3 percent of people with the disease, no family history of Huntington's can be found.Source: National Institutes of Health For more information on Huntington's diseasebull; National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/huntington/detail_huntington.htmbull; Huntington's Disease Lighthouse http://www.hdlighthouse.org/bull; Huntington's Disease Society of America http://www.hdsa.orgbull; Huntington's Outreach Project for Education at Stanford University http://www.stanford.edu/group/hopes/Discovery of Huntington's gene launches search for a cureComing TuesdayDecisions for the next generation
Rose Jackowski's five grandchildrennever knew their grandfather, who diedof Huntington's disease before they wereborn. Now they face questions about thegenetic legacy he left them. 412512Frank Jackowski walked his daughter Cheryl down the aisle at her wedding in 1981. He died a year later.COURTESY OF CHERYL HINDE 512337Rose Jackowski at the Huntington's walk, Sunday at Danada Forest Preserve, in Wheaton.