Lila Dummer was just days old when she participated in her first Down Syndrome Awareness Walk, carried by her mother, and she has returned with her family every year since. Now on her 11th year, she won’t just be walking, she’ll be leading.
On Sept. 16, Lila, 11, of Blair, and Sam Malin, 20, of Westby, will take the coveted position at the front of the procession, serving as royalty of the 15th Annual Greater La Crosse Area Down Syndrome Awareness Walk. The honor is fitting for the girl with longtime royal aspirations and a fondness for all things sparkly, and the popular young man chosen for prom court his junior year at Westby High School.
“I think they are a wonderful representation of people with Down Syndrome,” said Jenny Levendowski, member of and event coordinator for the La Crosse area chapter of the Down Syndrome Association of Wisconsin. “Lila is a leader in her family. She wants to do something, she does it. Sam has done a good job in setting goals and achieving them and is so involved in the community.”
DSAW, founded in 1990, serves families across the state. Each year, the organization, funded entirely by donations and supported by more than 800 volunteers statewide, provides education, resources and support to more than half of the 8,000 individuals in Wisconsin with Down Syndrome. Fundraiser walks are held in several counties each fall, with the mission of promoting inclusion, understanding and awareness.
“For us, it’s a time to celebrate the friends we’ve met through DSAW,” Levendowski said. “And for those in our inner circle to meet our greater DSAW family and merge those worlds.”
The 2016 La Crosse Area DSAW walk boasted 1,000 participants and netted $20,000. All the funds stay local, and go toward programs including speech therapy, monthly bike rides and family nights, and the Parent’s First Call program, which offers support and information for new and expectant parents of children with Down Syndrome. Families can also apply for $500 grants to be used toward an activity benefiting their children, from enrolling in a sports program to music therapy.
This year, the La Crosse Area DSAW has set an ambitious goal of $32,000, and the family festival after the walk will feature an ’80s theme, with a DJ, bounce house, face painting, raffles and games including “Double Dare,” modeled after the eponymous television show. Prizes will be awarded to the teams with most funds raised and most members. Levendowski’s daughter, Eliza, now 6, was last year’s fundraising winner, and she and her teammates were featured in promotions for the 2017 event.
Lila and Sam starred in an ’80s themed promotional photo shoot of their own this summer, but on event day, Lila will be wearing a blue dress (Down Syndrome Awareness ribbons are blue and yellow), purse and, of course, tiara.
“It makes her day (to be chosen),” said Lila’s mom, Angie. “She was a princess for a long time and after “Frozen” came out she decided she was a queen.”
While Lila is a “girly-girl” by all accounts, she has a sporty side, active in volleyball, baseball and gymnastics. The fifth-grader enjoys math, reading, music and gym, and names her favorite food as “all the food I want to eat.” Precocious and enthusiastic, she can often be found singing and dancing to self-written songs, and has a long list of dream jobs, including babysitter, teacher, gymnast and doctor.
“There is no doubt in my mind that girl is going to do big things in high school and beyond,” Levendowski said.
Sam boasts a multitude of talents and hobbies, bowling in the Special Olympics, running track and swimming, feats that seemed impossible a decade ago. Diagnosed with leukemia at 10, he developed neuropathy from the chemotherapy and was told he’d likely never walk again, but regained mobility with continued physical therapy. As an animal lover and longtime member of the Seas Branch Smithies 4-H club, Sam shows sheep each year at the Vernon County Fair, and is hoping to name his new lambs “Sam and Mama.” While usually outgoing and playful, Sam is a bit nervous about his royal status, saying, “I don’t need it. I like to be plain.”
“We’re totally surprised and very honored Sam was chosen,” said his mother, Laura, who has participated in five DSAW walks with Sam and their family. “He’s always eager to try new things.”
Both Sam and Lila will have personal king and queen court tents at the event with plenty of room for friends and family to relax in, and will also ride in the DSAW float at the upcoming Holmen Kornfest Parade. Lila intends to take her royal duties seriously, and has high praise for her king.
“I’m excited. I’ll be a nice queen,” Lila said. “Sam is awesome. He is kind of handsome. His smile ... and his hair is awesome.”