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Family Stories

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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Collin M as a toddler smiling and using his walker

The Monical Family

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.

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The Miller family poses together outside in front of a stream.

The Miller Family

Watching your child take their first steps is an emotional moment for any parent. For Brad and Amy Miller, the milestone represented all the obstacles their son Ryker has overcome in his short life. Ryker, age 3, was born with spina bifida and a structural defect in his brain called Chiari malformation. He’s had 11 surgeries, a tracheostomy, a gastrostomy tube and many hospitalizations. The Millers credit the Division of Specialized Care for Children and Ryker's medical team for helping their son achieve his full potential.

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A portrait of all 10 members of the Lyons family.

The Lyons Family

Natalie (Tallie) Lyons and her twin were born prematurely. Tallie experienced complications and was diagnosed with cerebral palsy. When Tallie needed major surgery to improve the muscle tone and tension in her legs, the Division of Specialized Care for Children was able to help.

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DSCC participant Jakob Kojro-Badziak smiling and posing with his parents, Jason and Jennifer

The Kojro-Badziak Family

Jennifer and Jason Kojro-Badziak met their son, Jakob, when he was 2 months old and hospitalized in the neonatal intensive care unit of an Indiana hospital. The couple immediately fell in love and started the adoption process. They were immediately thrust into the chaotic world of raising a medically complex child. Jennifer said the Division of Specialized Care for Children has helped her family navigate this new world and provide the best life possible for Jakob.

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Nedra Whitted smiles at her grandson Stanton as the two sit together

The Whitted Family

Stanton Whitted's short life has been a series of new diagnoses, physical and developmental delays, medical procedures, therapies and treatment plans. With the help of the Division of Specialized Care for Children and other community supports, Stanton is now an active little boy showing more potential than his family thought possible.

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Portrait of Division of Specialized Care for Children participant Everett Jamison

The Jamison Family

Everett Jamison's journey with a rare form of epilepsy has been a hard battle and an emotional roller coaster for he and his family. His mom, Trisha, says their Division of Specialized Children Care Coordinator has provided valuable emotional support and resources to navigate the medical, social and financial issues that come with Everett’s condition.

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