On a warm day in June 2014, Kara Nicole burst into this world, healthy and eyes wide. After receiving a healthy report Kara and mom were discharged from the hospital. Over the next 6 days, Kara became lethargic, began arching her back and her skin and eye color were becoming increasingly yellow. On June 12, during a visit at the behest of her parents, it was discovered that Kara was not only jaundiced, but severely so. So severely we heard the word Kernicterus for the first time. June 12, 2014 was the WORST day of our lives. We learned that the bilirubin that was causing Kara’s yellow tint, had broken her brain barrier and stained a portion of her Basil Ganglia. The portion of her brain that controlled her muscle movement. We heard words parents dread: Brain Damage. Our family’s life was forever changed that day. Faced with the challenge of being parents to a child with special needs was terrifying. We had no idea where to start or how to navigate the many systems we would encounter on our journey.
Our 1st experience with an insurance denial came when we wanted a wheelchair for Kara. We were told Kara was “to young to determine mobility.” As we went to work on our appeal process we reached out to friends within our community to find out if they had the same issues. They did. With all kinds of equipment. Gait Trainers, Wheelchairs, Standers, Toilet seats…All came with the stress of fighting the insurance companies for what our children needed. Durable medical equipment is not cheap, and without insurance, many families can’t afford the retail prices.
We decided something had to change. MyKaraCares.org is the organization born from the need for special needs families, to connect, share info, and hopefully help families navigate complicated insurance and medical systems.
