Antonia Verni Hi my name is Antonia and I like to sing. When I grow up I want to be a singer and a ballerina. And I want to be a kindergarten teacher.
Hi my name is Ronald. I’m Antonia’s father. In October of 1999, we went pumpkin picking a week before Halloween. On our way home, we were hit by a drunk driver. As a result, our daughter was paralyzed with a C-2 through C-5 injury and my wife was in a coma for two weeks.
Antonia is on a ventilator. She has a trach. For the last five to six years, she’s had a GT-tube. She also requires a vertical stand to help keep weight on her legs for an hour or so every day. It’s kind of like a medieval contraption actually that straps her in and holds her up vertically.
Even though Antonia was paralyzed from the neck down as a baby, she speaks very well and is extremely alert. She also goes to school; she’s in the first grade now. And she loves singing. She also recently started playing a lot of pinball. Nadine, her school nurse, attends school with her Monday through Friday. My wife and I take care of Antonia when we don’t have a nurse.
You have to be within 25, 30 feet of Antonia at all times, just in case the line to her vent pops off. You're whole day is basically structured around the time that she needs care, which is 24 hours a day.
Fazila Verni Hi my name is Fazila. I’m Antonia’s mother. After this accident, my whole life changed completely. It’s a different world; it’s not the same world that I used to know. You have to learn everything that you couldn’t believe can happen to a person. When our daughter became paralyzed, I had no idea what any of the equipment was. I had to learn it all from the very beginning.
Antonia cannot cough, simply coughing or even scratching her head or her nose or her eye, or any physical thing she wants to do is just not possible for her to do alone. You have to help her with any of these basic functions. It’s kind of like you’re living and breathing for that person. You have to do every single thing twice, for you plus the other person. She can’t go to the bathroom so you need to catheterize her. You have to always sunction her. Feed her. Give her a bath.
Her muscles often go into spasms. She has a lot of spasms and will arch in response. So, you have to relax her by helping her exercise or by giving her a massage or something like that. You basically do whatever it takes to relax her muscles and help her through.
We pay close attention to her vent. The vent is very, very important. You have to know how to operate it, know the alignment, how to change it. And, you need to be very quick because if no one is there to help you, you have to do a few things all by yourself at once and know if there is something wrong with the vent. So, it’s a very, very…important job.
Ronald & Fazila We’re just at the stage where, hopefully, in the near future we’ll be able to buy a van to transport Antonia on our own. We live in hope because it gives us strength, to live with hope for the future, for a better quality of life. That’s why we hope the scientists will come up with something. Recently, there have been some breakthroughs. Some are controversial, some aren’t. But there has been progress. And that’s what we’re hoping for.
This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.