My daughter, Caroline, is seven years old. She is funny and smart and obsessed with Disney princess movies and loves books about dinosaurs. Caroline also has Rett syndrome, a neurological disorder that interferes with her ability to control her body. She can’t talk, walk, or use her hands.
Her symptoms first appeared a little after she turned one. She still wasn’t walking or crawling, but otherwise she was healthy and was hitting her milestones—she could say about a dozen words, feed herself, and play with her toys. But when she was around 14 months old, we noticed that Caroline was making repetitive movements with her hands that didn’t seem voluntary. Within a couple of weeks, she started losing her words and choking on her food. Eventually, she started losing her ability to hold things with her hands. We finally got her diagnosis when she was 17 months old.
Now Caroline takes about ten different medications, multiple times a day. She takes 4 different types of medication for her seizures, which she has about 90 times a year. Without them, she would probably seize all throughout the day, every day. She undergoes a couple of hours total of lung treatment every day to avoid pneumonia, and takes other medications to relax her stiff body, make sure she doesn’t vomit all the time, and help her sleep. Her involuntary movements keep her up at night, and if she didn’t take medication she would only get a couple of hours of sleep every night.
Without Medicaid, I don’t know if we’d be able to afford this treatment. For Caroline, this is a matter of life and death.
Medicaid helps cover the cost of co-pays, treatments, medical equipment, and other expenses that our insurance doesn’t cover. Those out of pocket costs usually add up to about a couple thousand dollars a month. Without Medicaid, we wouldn’t be able to afford the hospital-grade equipment Caroline needs—like the cough assist machine, the nebulizer, the oxygen supplies, and the nursing staff. She used to spend several weeks each year in the intensive care unit, and she caught a cold almost every time. But because of Medicaid, and the equipment it helped us buy, she only has to visit the hospital once a year.
Medicaid also offers several hours of skilled nursing care, which allows my me and my husband to hold jobs. Without that coverage, one of us would have to quit our jobs—then we would not be able to afford all of the medical care that Caroline needs. That alone would put her life at risk.
I never imagined that I would have a child who would be dependent on us for every aspect of daily living for the rest of her life—from changing her diapers, to repositioning her to make sure she is comfortable throughout the day. And I never imagined that we would depend so much on a program like Medicaid.
But I also never imagined that I could love someone this much.
I want Caroline to live. I want her to feel safe, I want her to feel loved, and I want her to live in our home so that I can take care of her for as long as she is alive. Medicaid is the only way for us to be able to do that.
I would like to invite President Trump to meet Caroline and spend time with her, or with other kids like her. I think he would see first-hand how Medicaid helps us function as a family.