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.
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.
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.
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.
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.
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.
Brandy Santiago was pregnant with her son Trooper Orosco when he was diagnosed with Down syndrome. Trooper then failed his newborn hearing screening after birth. Brandy says the Division of Specialized Care for Children helped her family navigate the new world of her son's diagnoses. DSCC continues to provide a valuable support system as he grows and develops.
Zayd Jawad knows the challenges of growing up with a rare disease all too well. The 21-year-old was born with Hunter syndrome, a lysosomal storage disorder that affects his bodily systems and physical growth and development. UIC's Division of Specialized Care for Children was a constant presence throughout his childhood and adolescence, providing much-needed reassurance to Zayd and his parents. This support gave him hope and put him on the path to helping others.
Sabrina Doueihi was born with a fatty tissue that squeezed her spinal cord as she grew, eventually affecting her ability to walk and use her limbs. Her family says the Division of Specialized Care for Children has helped them adjust to Sabrina’s changing needs and provide the right equipment and supports to foster her independence.
