Originally published in the Courier-Tribune – August 6, 2018
RANDLEMAN — When Anthony Perez was 1 month old, he was diagnosed with cystic fibrosis. Because cystic fibrosis is especially rare in the Hispanic population, his parents, Norma Villa and Mauricio Perez, were shocked.
For the first several years of his life, Anthony underwent a course of therapies and treatment options, which doctors developed at Brenner Children’s Hospital, to keep his symptoms under control.
In 2016, when Anthony was ready to start school, his parents faced a new fear: How would Anthony’s immune system and medicinal needs handle public school?
Luckily, they discovered an alternative option that gave them security and control.
Cystic fibrosis, or CF, is a life-threatening hereditary disorder that affects the body’s lungs and digestive system. A person is born with CF when they inherit two mutated cystic fibrosis transmembrane conductance regulator (CFTR) genes, one from each parent.
CF affects the body’s production of sweat, mucus and digestive juices. It causes the body to produce a thick mucus that coats the lungs and can eventually clog passageways. CF causes symptoms like persistent coughing, lung infections and inability to gain weight.
For people with CF, even a common cold can be life-threatening.
Anthony was diagnosed when his parents noticed some irregularities with his eating habits and took him to the doctor. The doctor ran a sweat test and diagnosed Anthony with CF. The family was referred to Brenner Children’s Hospital in Winston-Salem where a team of doctors has been caring for Anthony for the past seven years.
Daily, Anthony undergoes rigorous medicinal treatments at home to help ease his symptoms. He takes three inhaler treatments every morning and two every afternoon. These provide medicine to Anthony’s lungs that help thin the mucus buildup. While he’s receiving his inhaler treatments, he’s also using a vest that vibrates against the chest wall to help spread the medicine and optimize its effect.
“He has hours of treatments every day,” his mom said.
Nutritionally, CF makes it more difficult to digest and break down food. Anthony has to take enzymes with every meal that allow his body to absorb nutrients from the food he eats. His weight is monitored at his doctor’s appointments. If he’s underweight, he becomes more susceptible to getting sick.
Anthony’s parents are primarily concerned with keeping their child safe. For this reason, they began to question if public school was the safest option for him.
The risk of public school
In September of 2016, Mauricio was called from work because Anthony, who was at daycare, began feeling extremely ill. He was rushed to Brenner where he stayed under observation for two weeks.
This incident caused his parents to seriously question how Anthony should get an education. Because of his extensive medical needs and the potential danger of a common cold, Anthony’s parents worried the risk of his health being compromised would be greater in a public school setting.
So, they began researching other options.
Anthony’s mom found the N.C. Virtual Academy (NCVA), a tuition-free online public charter school. NCVA is authorized by the N.C. Department of Public Instruction and provides standardized course work taught by state-certified teachers.
Norma knew that being able to keep Anthony at home where she and his father could administer his medications on his schedule would benefit his health tremendously, so they decided to enroll Anthony in NCVA in 2016.
NCVA proved to be the perfect place for Anthony. He’s able to interact with other students and his instructor, just like he would in a physical school, without ever leaving his house. He’s able to get a quality education without exposure to common airborne pathogens, his parents say.
Anthony’s parents play a huge role in his education, which is something they love about NCVA. Because Anthony is only 7 years old, he is unable to photograph and submit some of his offline work to his instructor via email. His parents act as Anthony’s “learning coaches,” and help guide him through his rigorous daily schedule of class sessions and offline assignments.
All of the materials Anthony needs to complete his assignments are provided for him from NCVA, including a computer, printer, textbooks, daily itineraries, to ensure that his work is done efficiently and on time.
Attending school online also allows the opportunity for Anthony’s medicine schedule to be accommodated.
“That was really the big thing,” his father said. “We were concerned with the possibility that his treatments would make him late for school or would take him away from class time. With this program it’s really simple; everything is on his schedule.”
NCVA requires six hours of class time each day, which is logged by a student’s online hours and offline work such as activity sheets or textbook readings. Anthony is able to work ahead in his courses if he knows he has a doctor’s appointment coming up. He’s able to move things around to accommodate his medical needs.
Anthony’s mom stays home with him during the day and administers his medications herself.
“I know he’s getting his medications on time, I know he’s not getting lost in the shuffle of other sick children, because I’m able to control it,” Norma said. “That gives me peace of mind.”
Anthony gets daily instruction from his teacher via web-cam; he interacts with other students in group activities via web-cam and attends face-to-face field trips and outings with his classmates and teacher. Mauricio said Anthony’s social life thrives despite, and sometimes because of, his unconventional education.
“If you’re concerned with your child’s health, there’s no need to be in a public school when there are other options, other programs that can provide your child with an enriched education,” Mauricio added.
To learn more about North Carolina Virtual Academy, visit https://ncva.k12.com/.