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Family Stories

A family of four smiles together in front of the Illinois School for the Deaf. The mom and dad are in the center of the photo. The mom holds her four-year-old son. He wears glasses and has hearing aids. The dad also has glasses. He puts his hand on the shoulder of his seven-year-old daughter.

The O’Brien Family

Jonathan and Lauren O’Brien are the proud parents of Alannah (7) and Josiah (4). Josiah is globally delayed with a bilateral hearing loss. He is also a participant of the Division of Specialized Care for Children (DSCC). "They’re a resource that can give you all the resources," Lauren says of DSCC. She especially appreciates the support and consistent communication from their Care Coordinator. “I think it's all about having as many advocates in your corner, right? And I think DSCC will provide those and we're super grateful for them,” Jonathan said.

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A mother and son smile together at a conference table.

Eli’s Family Story

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.

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Ekiko "Yesenia" Aiken sits on a park bench outdoors and smiles at her daughter, Davina, who is in a wheelchair and facing her while holding her hand

Davina’s Family Story

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.

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Twin toddlers Olivia and Ava Vasquez look at the camera. Ava is medically complex and has a tracheostomy tube.

The Vasquez Family

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.

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Daniel and Diana Barraza and their parents, Anita and Jose, pose with the Chicago Bears mascot while wearing Chicago Bears jerseys

The Barraza Family

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.

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Rachel and Zach Singelton hold their 3-year-old daughter Eloise closely between them while standing outdoors on a front porch. All three have big smiles.

Eloise’s Family Story

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.

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Dominic, a young dark-skinned boy with a tracheostomy, looks up and smiles while sitting on a bench

Dominic’s Family Story

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.

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Current DSCC staff member and former participant Lisette Rios holds her young daughter in her lap as they sit on an outdoor ledge overlooking trees, hills and a city

Lisette’s Family Story

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.

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Home Care participant Willa sits outside with a big smile. She is wearing pink glasses and has a tracheostomy

Willa’s Family Story

"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.

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Erica Stearns and her husband hold hands while they each hold one of their two children with complex medical needs

The Stearns Family

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.

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