The Doueihi Family
“DSCC came at a time when we really, really needed it... (Our Care Coordinator) Sarah Kelly has tried everything in her power just to make our life easier. She is extremely, extremely helpful, kind and caring.”
— George Doueihi
“It gives you hope that somebody cares.”
Sabrina Doueihi was a typically-developing infant when her doctors discovered a fatty tissue on her spinal cord. They didn’t know how it would affect her or what the long-term prognosis would be. A specialist could only tell her family one thing for certain – her ability to move was miraculous.
“He said, ‘As a physician, from what I see on the MRI, she shouldn’t be moving at all,” her father, George, recalled. “They called her a miracle child.”
The fatty tissue, called a lipoma, couldn’t be removed without risking Sabrina’s life. Over the years, the lipoma started to squeeze her spinal cord as she grew and affect her mobility. Now 16, Sabrina has lost the use of her limbs and uses a motorized wheelchair.
The Doueihis say the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) has helped them adjust to Sabrina’s changing needs and provide the right equipment and supports to foster her independence.
“DSCC came at a time when we really, really needed it,” George said. “(Our current Care Coordinator) Sarah Kelly has tried everything in her power to just make our life easier.
“She is extremely, extremely helpful, kind and caring,” he added. “She does not just go the extra mile for you; she goes 2,000 miles just to help you.”
After the lipoma on her spine was discovered, Sabrina started undergoing physical therapy and was referred to DSCC. DSCC provides free care coordination for youth with nervous system impairments and other special healthcare needs.
Sabrina’s DSCC Care Coordinators over the years have provided emotional support to the Doueihis and connected the family to valuable resources.
Their current Care Coordinator Sarah also helped the family navigate the change from private insurance to All Kids after George retired. DSCC was able to help the Doueihis pay for equipment not covered by their insurance as Sabrina became weaker and eventually unable to walk. This equipment includes an exterior wheelchair ramp and a wheelchair lift for their van.
Sabrina said she was delighted when the ramp was installed in their garage.
“I remember when I would get home from school, my dad was at work, so my mom had to help me get inside and there were steps, and it was hard on her to get me up,” she said. “Once we go the ramp, I just remember how relieved I was that my mom didn’t have to wrestle with me to get me inside.”
Sarah also has attended one of Sabrina’s individualized education program meetings to ensure her changing needs were being met at school.
“(Sarah) always wants to know what else she can do for us. Without her help, we probably wouldn’t be able to do what we’re doing right now with Sabrina,” George said. “She always calls and asks about Sabrina and how everything is going to make sure everything is all right. As a parent, you really appreciate that… it gives you hope that somebody cares.”
Sabrina said having the appropriate equipment and services to live as independently as possible is vital.
“It’s a lifesaver,” Sabrina said. “Growing up, I was always different from other kids but my parents never treated me different… It gives me confidence and maybe I don’t need someone around me 24-7 just to do something simple.”
Sabrina is currently a straight-A student in general education classes and getting ready to complete her sophomore year of high school. She currently hopes to attend the University of Illinois in Urbana-Champaign and major in pre-law so she can become an assistant U.S. attorney.
“I could speak up against oppression or discrimination against people from different races, sexual orientations and people with disabilities because a lot of people have helped me in my life and I want to give back to them,” Sabrina said. “I want to be a positive force in the world because I have that opportunity. My parents have given me everything I need to do that.”