By GEOFF FOX
Doctors didn’t expect Ben Zanca to live very long. Even before his birth, fluid was drained from his lungs every week for eight weeks until he was delivered.
Ben’s parents, Ann and Tony Zanca, were told Ben may need a chest tube after his birth and possibly surgery.
“But, when they put the (chest) tube in all the blood vessels shut down,” Ann Zanca said. “It’s called persistent pulmonary hypertension, which not many people survive at that age. He was transferred to Arnold Palmer Hospital for Children (in Orlando) where there is a heart-lung bypass machine.”
Things looked bleak.
“They told us he was going to die,” Tony Zanca said. “They called in a priest and everything.”
Fortunately, a nitric oxide treatment worked and Ben did not have to go on the lung-heart bypass machine.
“They said they’d never seen a baby as sick as Ben pull through,” Ann Zanca said.
Unfortunately, Ben’s medical struggles and the family’s worries were only beginning. Problems with his blood vessels went misdiagnosed for more than 12 years.
About 18 months ago, Ben, now an outgoing 14-year-old who loves camping, was finally diagnosed with CLOVES syndrome, an extremely rare disorder characterized by tissue overgrowth and complex vascular malformations. Worldwide, less than 200 cases of CLOVES syndrome have ever been identified, according to information from Boston Children’s Hospital.
Because of CLOVES, Ben is at risk for developing blood clots and has regular doctor visits to monitor his vascular health.
That’s not his only issue. Shortly after he was born, Ben was diagnosed with cerebral palsy. He also has been diagnosed on the autism spectrum and deals with epilepsy and asthma.
Until the current school year, he attended public school in Altamonte Springs, Florida, where he lives with his family, including 9-year-old sister Megan. Tony Zanca works in the parts department of a local auto dealer and Ann works part-time jobs as a computer programmer analyst and as an advocate for parents with children who have an Individualized Educational Plan.
Ben was not thriving at the public school.
“It’s not that they didn’t care, but he wasn’t going anywhere; he was going backward,” Tony Zanca said. “Teachers have their hands tied with all the new testing and all they did was quizzing for the test. There was no hands-on learning, which is what Ben thrives on.”
For years, Ann Zanca wanted to enroll Ben in the nearby Pace Brantley School in Longwood, but the family couldn’t afford it. Established in 1971, the school has always been geared toward students with learning issues. It is situated on nine wooded acres that offer a serene setting.
Eventually, a friend told Ann Zanca about the Gardiner Scholarship for children with certain special needs; the scholarship is managed by Step Up For Students. In 2016, the Zancas applied for the scholarship – which can help families pay for tuition at partner schools, approved therapists, specialists, curriculum, technology or even a college savings account – and Ben was accepted.
“Ben is very social and I don’t want him to miss out on the experience of school,” Ann Zanca said. “They have a well-rounded curriculum and lots of extra-curricular activities. They even have a prom. I was also concerned if it would be academic enough. Of all the places I knew of or visited, it seemed to be up to standards.
“It seems to challenge him but he doesn’t seem overwhelmed. There are people there to help him. We do have a private tutor for math. His teacher tells me he’s definitely challenged in pre-algebra, but he’s doing well. That makes me happy. The goal is that he’ll be able to get a regular diploma and either go to vocational school or college afterward.”
Now in eighth grade, Ben enjoys going to school. Due to his medical issues, he often has doctor’s appointments during the school day. Before, his mother said, he would sometimes call from school to see if she could pick him up early. Now, he doesn’t want to leave Pace Brantley’s campus.
While he has historically struggled with reading, English is now one of his favorite subjects, along with math.
“We were learning substitution, the three ways of substitution in math,” Ben said after a recent day at school. “That’s in algebra; it’s coming along.”
Of his favorite times of day is FLEX (Focused Learning Experience) Time, when students can choose a subject of their own to explore after lunch. Activities can include arts and crafts, learning a foreign language, tennis, yoga, tai chi or taking virtual field trips on a Smartphone.
On this particular day, Ben chose art.
“We were drawing different types of flags and what they look like,” he said. “I drew the Florida flag.”
Jennifer Portilla, Ben’s reading and language arts teacher, said she has seen him flourish since the school year began.
“He seems really comfortable and he’s willing to take risks. He’s not afraid to not be successful” in class, she said. “Academically, he’s making strides. He’s a pretty good writer for his age. He is able to write an essay and he doesn’t seem to struggle as much as at the beginning of the year.”
One of Ben’s other interests is the Boy Scouts. Despite his son’s many medical obstacles, Tony Zanca said he tries to treat him “like any other boy would be treated.” On a recent Boy Scout camping trip, he allowed Ben to paddle on a canoe with another scout.
“Years ago, I would never let him out in canoes down the river without me,” Tony Zanca said. “But it’s like I told him, ‘I’m going to have to start letting you do things by yourself, make your decisions and not do things wrong’. Someday soon, I’ll let him go on a (Boy Scout) camping trip by himself.”
The Zancas say that while Ben is obviously aware that he has medical issues, he doesn’t dwell on them. Because CLOVES can cause blood clots (Ben has had a few), they constantly monitor how he’s feeling. Now that he’s at Pace Brantley, which has a nurse on campus, his parents are more at ease.
“The scholarship was huge, like the answer to our prayers,” Ann Zanca said. “His self-confidence has increased tremendously. It’s a lot of hands-on learning. He made a car out of a Coke bottle and started telling me about Newton’s Laws of Motion. His self-confidence has increased tremendously.”
Reach Geoff Fox at Gfox@sufs.org.