Former Missouri Secretary of State Jason Kander joined the Drive for Our Lives bus in Kansas City on Wednesday to join Missourians and say #ProtectOurCare.
At the event, we heard from Jordan, who shared his daughter’s story.
“I think a lot about that life-changing moment where you hold your child and you look at them and you know your life’s just not going to be the same. For me, that happened in 2008 when my daughter Isabelle—my first child—was born. Isabelle was a beautiful six and a half pound baby girl. As we took her home, she began to lose weight instead of gaining weight. We were watching our child wasting away in front of our eyes.
We learned a few weeks later, based on the newborn screening, that Isabelle had cystic fibrosis. Believe it or not, it was a relief because it explained why she was losing weight. We understood that we needed to give her the medication and once we did, she turned into a happy baby girl again and that was a wonderful thing for us. We were so grateful for the doctors and the health care that we had.
Fast forward another year, to 2009, My family started to receive letters from the insurance company letting us know that we were approaching the lifetime limit for Isabelle. She was one year old.
As a parent, I kept asking myself, ‘How am I going to take care of my child?’ Isabelle’s medication, just for preventative medications, not if she gets sick and has to go to the hospital, are $350,000 a year. That’s not something that I can afford—that’s not something that you can afford. I think that’s the most important thing to know is that this can happen to anyone of us.”
After the event, Jason joined organizers in Kansas City to hear more about what is happening on the ground and how people can get involved to continue to fight to save our care.