Two people with local connections will join forces this weekend to raise money and awareness for a rare genetic disorder that has touched both of their families. They will participate in a walk this Sunday, May 5, in St. Charles County to help raise money to fund research for, and increase awareness of, Prader-Willi Syndrome (PWS). The event, called “One Small Step,” will be held at Fort Zumwalt Park in O’Fallon and is being organized and hosted by Lauren Unger, St. Peters, whose husband works for the city of Warrenton. Registration for the walk will begin at 9:30 a.m. The one-mile walk will get under way at 10:30 a.m. The event also will feature a race car for viewing, face painting and a silent auction.Organizing the “One Small Step” walk was a “daunting but exciting” task, Unger said. She added that this is the first year for the event, but her plan is to hold it on an annual basis. The Ungers’ fourth child, Kellen, age 2, was diagnosed with PWS when he was 10 days old. PWS is a genetic disorder which affects approximately one out of every 12,000-15,000 births, according to Toni Truetken, the victims’ advocate for the Warren County Prosecuting Attorney’s Office. Her grandson, Anthony Horton, age 8, also has PWS. People diagnosed with PWS will have the syndrome for life. Treatments are available, but no cure has been found. Unger and Truetken will meet in person for the first time Sunday.Diagnosis If a child exhibits symptoms of the disease, a blood test can be performed to determine if a child has PWS. Unger said the test was performed on Kellen 10 days after he was born. “He had low birth weight, small genitalia, small hands and feet, poor muscle tone, light hair and eyes, poor skin color, almond-shaped eyes and a weak cry,” Unger recalled. Anthony was diagnosed when he was 2 months old, Truetken said. Truetken said the disorder affects the 15th chromosome resulting in a variety of symptoms, including: Poor coordination, low muscle tone, low metabolism, vision problems, sleep apnea, delayed growth and cognitive or behavioral disorders which can range from mild to very severe. Many individuals with PWS also have low muscle mass, which causes them to gain weight rapidly because their bodies are not burning enough calories. “The more muscle mass we have, the more calories we can burn,” Truetken explained.People with PWS also have extremely powerful urges to eat and their tolerance for pain is very high. As a result, if unsupervised those affected by PWS could continue eating until they rupture their stomach. Truetken also said people with PWS sometimes will eat foods which are not meant for human consumption, such as pet foods. “They also can drink too much water,” Truetken noted.“You start out having difficulty feeding them and then when the child is between 2 and 5 years old, a switch in their brain flips and they’re hungry all the time and you can’t feed them enough,” Truetken stated. “If their hunger could be controlled, most of these people who have PWS would be able to live fairly normal lives.” Unger said she and her husband have to limit Kellen’s calorie intake to 800-950 calories daily. She also noted that her son is on a low-fat, high-protein diet. As for Kellen’s three older siblings who are ages 9, 7 and 5, respectively, Unger said they have to be reminded not to give him food and to be gentle with their brother. Both Kellen and Anthony also are going through various therapies, including physical, occupational and speech. Truetken said misunderstanding of PWS on the part of society causes people with the disorder and their families to feel isolated and alone. “Our country is very difficult on people and children who are overweight,” Truetken said. “These people are not coordinated or athletic, but they’re just different. That’s why awareness is so important.” One Small Step logo