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.
BY GEOFF FOX
Nine years ago, Kamelia Martin was born perfectly healthy in Bulgaria. Yet, her adoptive mother, Christen Martin, said for years she was given a regimen of anti-seizure medication, tranquilizers and sedatives.
The circumstances made for a tough, turbulent adjustment after Martin and her husband, Mason Martin, adopted Kamelia two years ago.
“When an infant comes into the orphanage, they’re put in an isolation room where they learn their cries won’t get any attention,” Christen Martin said. “After they don’t cry, they get to come in the room with other children.
“They are treated like animals. They never experience the love of a father or mother. They’re put into a (drug-induced) stupor so they’ll be quiet and compliant.”
For Kamelia, the results were horrific.
By the time Martin and her husband, Mason Martin, adopted her from the orphange, she was diagnosed with institutional autism and her IQ was measured at 35, the low threshold for moderate intellectual disability.
Because she had been malnourished for so long, Kamelia’s head was too small for her body and her ankles were weak and misshapen; she could not walk until she was 3. When the Martins brought her home to Louisiana, where Mason Martin was stationed with the U.S. Air Force, she could hardly communicate or speak, even in Bulgarian.
None of that deterred the Martins, who had three young children of their own when they decided to adopt Kamelia, who they often call “Kami.” Christen Martin said the couple knew since they got married that “God was calling us to adopt.”
“It was a divine sequence of events,” Christen Martin said. “The Lord just weighed Bulgaria on my heart.”
When the Martins first saw a photo of Kamelia, they saw a small, scared, lonely-looking girl. The photo weighed on them. They knew they wanted to help.
“When we pulled her file to find out more about her, we discovered she was born on Mason’s birthday the year of our marriage,” Christen Martin said. “Many little details like this worked together to encourage us each step of the way that our family was right for Kami.”
After an adoption process that took the Martins several months and a couple of trips to Bulgaria, Kami came to live with them in 2014. The transition from living in a cold, unloving Bulgarian orphanage to life in an American home with parents and siblings was turbulent for both Kami and her new family, including brothers Ezekiel, 7, and Isaiah, 3, and sister Eden, 5.
At the time, Kami was 7. She didn’t know how to play and could barely communicate. And, after years of being administered unneeded medication, she endured withdrawal from the drugs when she came to live with the Martins.
“The Bulgarian orphanage staff gave us prescriptions for medications they truly believed she needed,” Christen Martin said. “We consulted with a Bulgarian psychiatrist and she encouraged us to get her off them gradually. The withdrawal was definitely intense. There was so much outrageous behavior already that we didn’t know what were withdrawal symptoms.
“There was a lot of screaming, thrashing, rolling, clawing and biting. She wasn’t given any tools for healthy or normal communication. If she was disappointed, she’d drop to the ground and roll, scream and writhe. She was definitely just driven by instincts every moment and ruled by them without self-control. What happens to a person when they’re never given any love is tragic.”
The Martins tried to brace their biological children for the ordeal.
“They responded amazingly. We prayed for her together,” Christen Martin said. “When the other kids witnessed the screaming and scary behavior, they were nervous and afraid and it was hard, but the other children learned from an early age about loving others and how truly ugly child abandonment is; it’s one of the worst things in the world. They realize this is why you have a family. We all need it. I think they’ve taught Kami more than Mason and I could. They taught her how to play and be a child.”
In 2015, the Martins moved to Orlando. By then, Mason Martin was out of the Air Force and working for Wycliffe Bible Translators, which focuses on translating the Bible into hundreds of languages.
Christen Martin homeschools her children, but she needed help with Kami. In Orlando, the family learned about the Gardiner Scholarship managed by Step Up For Students.
The Martins applied for the scholarship and Kami was accepted, due to her intellectual disability. They used the scholarship to hire Kathy Wood, an occupational therapist who has worked with Kami twice a week for about a year.
It was slow going, at first.
“I do in-home therapy and I met her with her family around her,” Wood said. “It’s nice to have that advantage because sometimes a clinic can add a whole level of distance. That said, Kami was very difficult to engage. I hate to say she was a feral child, but that’s a clear view of what it felt like. She had not had a lot of human contact.
“When she first arrived, there was still a lot of no eye contact and she would not tolerate being touched at all. She would not engage me in any way. She would turn her back on me and would not include me in her space – like an animal might do to protect itself or home.”
But Wood showed up consistently and slowly earned Kami’s trust. After a few weeks, Kami allowed Wood to perform reflex techniques that help train her body to adjust to life outside of a crib.
“We do basic exercises,” Wood said. “On her feet, I stimulate the tendons to increase walking ability, coordination and balance, even her emotions. I do cross-body reflexes, where you stimulate the bottom left foot and raise the right leg, cross it over the body and back down. Then, we do the other leg. You work both halves of the brain that way. It increases coordination and motor control.”
Kami has been speaking more lately, but there is much progress yet to be made. The family uses most of the scholarship money for occupational therapy, but it has also covered a trip to a pediatric eye doctor.
“She’s probably not very clear if you don’t know what she’s trying to say. Her thoughts are jumbled and she’s trying to figure out how to say things,” Wood said. “I’ve learned her language a little bit. The other day, she was telling me about a trip to the playground. She said, ‘Miss Kathy, swing at the playground, tic-tack, tic-tack, tic-tack.’ She was telling me about the trip to the playground and how she heard the swing going up and down.
“She’s wired differently than you and I; she is very in tune to sounds. She learned in that crib what was safe and not safe by sound. Her senses of sound, hearing and touch are all heightened because she didn’t get proper development.”
Simply being around the Martins has been crucial to Kami’s development, Wood said.
“Four or five months ago, I saw her imitating and playing pretend for the first time. She put a baby doll to bed with a blanket – it was appropriate play,” Wood said. “She had been playing with her sister and her sister taught her that. She wasn’t hitting the baby against the wall, it was very appropriate. She could mimic a loving gesture. She has the ability to understand sequence. That shows me she has tremendous ability to grow and thrive in many ways.
“I’m really excited for her potential. Last week, she looked at me, smiled warmly and said ‘Miss Kathy.’ We were playing a silly little game, but she connected with me in a genuine way.”
Mason Martin said he is encouraged by the progress Kami has made since she joined the family two years ago, but he understands there is still a lot of work to do. Like most parents, he wants his children to become happy, productive, self-sufficient adults.
“It’s been a lot of work for her and she’s never really been made to do that work before,” he said. “She needs somebody to spend time with her. It’s been exciting and a lot of difficult challenges on the way – some days more than others. The best way to describe it is she’s very resilient. As long as we don’t give up on her, she won’t give up. … She really needed somebody who wouldn’t give up on her. It’s been amazing to see.”
Christen Martin said Kami is on about the same social level as a preschooler, but is learning how to act appropriately around people. Academically, she has progressed a bit further.
“She longs for connection, but it takes time to understand how to relate to others in proper ways,” Christen Martin said. “She is in the pre-writing stage; she knows her colors, shapes, some animals and everyday objects. She’s working on forming letters and learning their sounds, and we do believe she will learn to read and write. We just don’t know what the timetable will look like.”
By GEOFF FOX
Darius Cook wants to someday become an entrepreneur.
He isn’t sure yet what type of business he wants to run, but the outgoing recent graduate of Dr. Phillips High School in Orlando said he feels confident that his communications skills will be used.
Cook, 18, is working as a cashier at Publix, while he waits to start classes at Valencia College in August. After completing two years at Valencia, he plans to transfer to the University of Central Florida in Orlando. The costs will be covered, in part, by a tuition-reimbursement program at Publix.
His mother, Amy Cook, takes pride in her oldest son’s bright prospects. In 2008, as Darius prepared to enter fifth grade, the single mother of four worried he wasn’t getting a quality education at their neighborhood school.
“It was the worst of the worst,” she said. “My daughter went there, so I was kind of involved, but the environment and the other kids there were not nice kids. And there was no personalized attention. There was no art and music, just math and reading, and tutoring to pass the FCAT.”
At the day care center where her youngest children stayed, administrators told Cook about Step Up For Students, the nonprofit that helps manage the Florida Tax Credit Scholarship. The program helps expand educational opportunities for lower-income children.
Cook was skeptical. She said she applied for the scholarship in 2008, mostly so the day care workers would stop “pushing me to sign up for it.”
She is now thankful for their perseverance.
“It wasn’t difficult; it was too good to be true,” said Cook, who works as a server at a local deli. “I didn’t think it was going to happen.”
Thanks to the scholarship, Darius was enrolled at Saint Andrew Catholic School, a kindergarten through eighth grade school in south Orlando.
“It’s literally in my backyard. I mean, we can literally jump the fence to get there,” Cook said. “And it is a (National) Blue Ribbon school. When Darius started going to Saint Andrew, I noticed how much of a better education he got than my (older) daughter. It’s a huge difference, especially among their peers. There’s no bullying. It’s friendly and a nice environment.”
Darius said the differences between Saint Andrew and the public school were obvious from Day One.
“It’s a more controlled learning environment,” he said. “The classes are smaller and the teachers are a lot more available to help you. Multiple times, I went in earlier in the morning and my math teacher came in early to tutor me, just because I asked her to.
“To this day, I feel close enough to go in and talk with them.”
Besides excelling in the classroom at Saint Andrew, Darius participated in soccer, volleyball, basketball and track.
“Darius was always a gifted communicator and leader in his class,” said Andy Sojourner, assistant principal at Saint Andrew. “I’ve seen him a few times since he graduated and gone onto the public high school. He talks about how much he valued his time here and wants to be involved in alumni (groups) in a leadership capacity.”
While Dr. Phillips High is a public school, Cook said that Saint Andrew helped Darius make a smooth transition.
“They really work on your individual needs,” she said. “The school’s eighth-grade class was small – 30 kids. Some of them went to another private high school. Darius and four other kids went to Dr. Phillips, and (Saint Andrew) did a very good job of preparing them.”
Cook’s youngest sons, A.J., 13, and Nicolas, 8, now attend Saint Andrew, thanks again to Step Up and the scholarship program.
According to Sojourner, A.J. is also a gifted student-athlete.
“He balances (sports and academics) really well,” Sojourner said. “Nicolas is a great young man. Their family is just very involved in the community. They’re always at our fundraisers and volunteering for activities at the school.”
Nowadays, when he isn’t working or studying, Darius said he most enjoys attending a local ping-pong club, where he takes lessons and competes against high-level players.
While his future aspirations are formulating, he has a general idea that his communications talents will come into play.
“At a young age it was cultivated that I had good skills in talking to people and handling situations,” he said. “I’ll find what’s best for me, based on my skill set.”
Geoff Fox is always looking to tell a great story about our scholarship programs. Have Step Up students, partner school, therapist, teacher or other related news you to see a story about? Please reach him at firstname.lastname@example.org.