Binghamton, New York welcomed the Drive for Our Lives bus on Tuesday morning with former head of the Office of External Affairs at the U.S. Department of Health and Human Services, Anton Gunn, and President of the American Federation of Teachers, Randi Weingarten.
In Binghamton, we met Cami and her grandmother, Linda. Read how the Affordable Care Act has impacted their lives:
“When my granddaughter, Cami was born, she was what they called a ‘floppy baby,’ which meant that she barely moved at all. You knew something was wrong. She ended up spending 14 days in NICU. After two years, we finally got a diagnosis. Cami had Prader-Willi Syndrome, which is a genetic condition that affects between one in 12,000 to one in 15,000 children. Cami was blessed with this chromosomal problem.
It’s a very complicated situation, but one of the things we need to deal with is her weak core strength. At six months old, she could barely hold her head up because of her neck muscles. As a newborn, she could barely swallow anything. Two ounces of formula would put her to sleep—she couldn’t do, it was just too draining. She ended up walking at the age of three.
Now, Cami is 7-years-old. She takes dance lessons, she takes horseback riding lessons, she takes swim lessons—and she goes to regular school with help. She’s done absolutely fabulously. She has had therapy—physical therapy, speech therapy, and occupational therapy—since she was about 6-months-old. A lot of the things she does, like the horseback riding, is paid through Medicaid services.
I look at my granddaughter and how far she has come, and I know so much of that is because of all the support and help she’s gotten. I wonder, if Medicaid were to be gutted, what would happen to that little child who does not get all of that therapy? They would never be as blessed as Cami is. What happens to my granddaughter if she loses those therapies? What happens to her family if they lose the $2,000 a month that it costs for her human growth hormone shots? It’s extremely important that we look out for all of our people, especially the people who need it the most.”
Watch the entire event in Binghamton here.
