When you donate to the United Way of Greater St. Louis (UWGSL) community campaign, your gift gives us the capacity to work collectively with our safety net of nonprofit partners to help our neighbors survive, thrive, and believe in their limitless potential. One of those neighbors is Adeline Liss, whose ambitions and talents were inspiring, yet a rare developmental disability threatened to derail her from reaching her full potential.
Fortunately, a UWGSL partner agency provided her with the resources needed to overcome obstacles and gain the confidence to sing beautiful symphonies.
Adoration for Adeline
Shortly after Adeline was born, doctors began to notice some abnormalities in her development, mobility, and cognitive function. Beginning at six months old, several primary care physicians and neurologists warned the Liss family of Adeline’s developmental delays, but they all found it difficult to determine a specific diagnosis.
Finally, at 2-years-old, genetic testing revealed an array of developmental challenges that were so rare and complex that it made it hard for an average person to comprehend. To simplify, the Liss family coined it, “Adeline’s Disease.”
This condition caused struggles with her speech as well as her motor, cognitive, and social skills. The realities of Adeline’s condition was unsettling for the family, but UWGSL partner agency, St. Louis Arc provided support and stability in the midst of uncertainty.
“It was scary, but we had a ton of support from the St. Louis Arc and the doctors that we had,” said Lisa Liss, Adeline’s mother. “We started meeting with some of the families from the St. Louis Arc whose kids were around the same age who all had different disabilities, so with the Arc we had that support system that we all needed.”
The St. Louis Arc uniquely empowers people with disabilities by providing a lifetime of high-quality services, family support, and advocacy. Adeline was first introduced to the St. Louis Arc through their Belle Children’s Services program that focuses on helping infants and toddlers with developmental delays and disabilities learn social and academic skills.
This program offered her occupational, physical, and speech therapists that would come to her home and help her learn how to do things like feed herself, drink out of a cup, interact with other children, have proper posture, and more. Thanks to the St. Louis Arc, Adeline’s progress exceeded the Liss family’s expectations.
“No doctor was able to tell us what to expect with Adeline’s progression because of her diagnosis being so rare,” said Adeline. “The fact that she was walking and talking when she started kindergarten was amazing and it did surprise some people because no one knew what to expect.”
These early progressions were building blocks for the years to come. As she grew into her early adolescent and teenage years, the St. Louis Arc stayed right by her side.
“Adeline’s Disease” was no match for her lofty talents and aspirations.
Beautiful voice, beautiful spirit
As Adeline began high school, she had grown into a confident, warm, and enthusiastic person with a passion for music and singing.
Adeline was not only speaking, she had the confidence to get on stage and sing in front of large groups of people with her school choir.
“As far as singing, I honestly don’t know how she gets up there on stage, some of the places they sing are huge,” said Lisa. “She’s on stage, standing up tall, and my husband and I are sitting there, and my husband’s usually crying, and it’s just awesome, we’re so proud of her.”
Shortly after graduating from high school, Adeline joined a local singing group called CHARIS – The St. Louis Women’s Chorus. With this group she performed at several prestigious concerts including a rendition at Carnegie Hall as well as last year’s GALA Choruses Festival in Minneapolis where she performed before over 2,000 people and met singers from all over the world.
A staff member from the St. Louis Arc even accompanied Adeline on her trip to Minneapolis, ensuring she had all the resources and support needed to make the trip a success.
“I have to admit, I sobbed as I dropped her off at the airport – only partly because of my anxiety – mostly because of the absolute overwhelming pride in the woman she is becoming and of gratitude of the people who love and support her,” said Lisa.
Another one of Adeline’s favorite things to do is help people. Every year she participates in a missionary trip to Guatemala where she volunteers to help people who are in need. Recently she even helped build a house for a family in Guatemala. She also works as a teacher’s aide, helping elementary school children learn about music and art, and volunteers to support people in her community through her church.
St. Louis Arc continues to be involved in Adeline’s life, helping her chart a path towards a successful adulthood where she can continue to help people, sing, and make the world a better place.
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