Eli, 18, is a musician and songwriter. He is also a young adult with Down syndrome and autism. Now that Eli is becoming an adult, he’s planning for his future and how to share his original music with the world. His mom, Beatrice, wants to help him achieve his goals and highest level of independence. The Division of Specialized Care for Children (DSCC) is an essential partner in helping the Alvarez family navigate the crucial transition to adulthood.
Ekiko "Yesenia" Aiken was a tireless advocate for her daughter, Davina, throughout her journey with Aicardi syndrome. When Davina passed away at 16 in December 2022, Yesenia's advocacy didn’t stop. She wanted to use what she learned to help other families. One way Yesenia continues her advocacy is through our Family Advisory Council. “It really helped me to sort of pick that baton back up and feel connected to Davina and feel like that energy and drive and momentum could benefit someone else other than just our family,” Yesenia said.
Jaclyn Vasquez delivered her twin daughters nearly 28 weeks early at the height of the COVID-19 pandemic. It was the beginning of a rollercoaster journey that led her family to the Division of Specialized Care for Children. Now, Jaclyn helps advocate for other families like hers and build community through our Family Advisory Council.
Siblings Daniel Barraza and Diana Barazza were born with the same rare condition. Yet, it took many years before their family knew their true diagnosis. The news was initially difficult for their mother, Anita. Now, she focuses on her children’s abilities and helping them have the best quality of life possible. She is thankful for the support the Division of Specialized Care for Children provides to help maximize her children’s strengths, navigate their needs and connect with resources as they grow.
Eloise has a rare brain malformation called alobar holoprosencephaly. Her parents credit their “village” -- a support team of friends and family, understanding doctors and the caring professionals from the Division of Specialized Care for Children (DSCC) -- for helping them get through the many unknowns.
Dominic was born with a rare condition that affected his abdominal wall and prevented his lungs and chest wall from fully developing. He required surgery and spent many months in the hospital during his first years of life. Through the highs and lows, the Division of Specialized Care for Children has helped Dominic's family navigate his changing needs over the last seven years.
Born with a cleft lip, Lisette grew up receiving services from the Division of Specialized Care for Children (DSCC). DSCC helped the Rios family find medical specialists, discuss treatment options, coordinate surgeries and ensure Lisette and the family’s overall needs were met. Now as a DSCC employee herself, Lisette is that helping hand and voice of comfort for other families like hers.
"Wonder Willa" was born with Congenital Central Hypoventilation Syndrome (CCHS), a lifelong and life-threatening genetic disorder that affects her breathing and nervous system. Her family is grateful for Willa’s amazing medical team and the support of the Division of Specialized Care for Children to help Willa continue to grow and thrive amid the unknowns.
Margot and Caratacus Stearns were both born with a rare genetic mutation that causes profound intellectual and physical disabilities. Their mother, Erica, says the Division of Specialized Care for Children was the first organization to help her family learn to navigate their new lives caring for children with complex medical needs. Erica now serves as the chair of DSCC's Family Advisory Council.
Collin Monical was born with abnormalities of the hips, feet and legs. The Division of Specialized Care for Children (DSCC) helped Collin and his family get the right equipment for his developing mobility needs as he grew. His DSCC care coordination team also provided guidance and resources, including attending the Illinois Statewide Transition Conference together in 2019, to help Collin and the Monicals navigate each stage of Collin’s life. Now 21, Collin is happily employed and ready to take on adulthood with the same determination he showed throughout childhood.
