Jackie Kancir is a dual caregiver. Her husband is a combat injured Marine, and her daughter, Jadyne, has a rare genetic condition, SynGAP1.
SynGAP1 causes profound intellectual disability, hypotonia, level 3 autism, Lennox-Gastaut Syndrome, sleep disturbances, feeding disorder, and severe behaviors. Jadyne requires 24/7 support and assistance with most ADLs. Finding service providers and treatment options has been a significant struggle for the family, leaving them to manage Jadyne’s complex medical needs mostly on their own. Jackie advocates for better access to quality care and crisis intervention in hopes that children with profound I/DD will one day have the options they need.
Jadyne is a beautiful, vibrant, compassionate young lady who loves to be helpful, care for others, and make others smile. Jackie believes with appropriate supports, Jadyne could thrive, and she works day in and day out to try to make that a reality.
Favorite Respite Activity
In March 2020, we left for a full 24 hours to go to a quiet AirBNB a half hour away. It was our anniversary and our first time away from our daughter in years. We didn’t realize how badly we needed that kid free moment until we had it. It was really re-energizing. A military caregiver organization (WWFS) has provided a couple creative helpful ways for me to relax over the past year. They sent a restaurant gift card for Valentine’s day so we could order food in and still have a no-cook night, and they sent a bath set for Mother’s Day that I’ve enjoyed experiencing while our daughter was in school. I don’t have a lot of experience with respite, but those examples have been really helpful.