HOUSTON (AP) — Staying alive has not left 10-year-old Zechariah much time to be a kid.
The Houston Chronicle reports at least 16 times a day, his grandmother injects him with life-saving medications. Eighteen of each day’s 24 hours are spent with a nutritional formula dripping into the plastic feeding tube affixed to the upper left corner of his abdomen. Then there are the doctors’ appointments, physical therapies and daily pricks and prods to help manage his rare genetic condition.
But there’s one time each day that the soon-to-be third-grader always looks forward to: When Donna Shanklin-Henderson throws open the door and lugs in her crate full of fun. Even though the Houston Independent School District teacher’s lessons are pared down in summer months, Zechariah’s grandmother Raine said her family would be lost without them.
“It keeps the children who are medically dependent on the ball; it keeps their minds moving forward. They’re not forgetting what they’ve already learned and are moving forward to learn more,” Raine said. “That’s so important because he’s already behind — he’s been in the hospital so much.”
Shanklin-Henderson and a handful of teachers fan out across Houston-area hospitals, homes and hotel rooms during the school year to provide education to children who are too sick to attend regular classes. While her students improve academically during the school year, Shanklin-Henderson said, they tend to fall farther behind their classmates each summer.
The lagging performance inspired her to form Team TEACH — a summer program aimed at bridging the gap between medically fragile students and their healthy counterparts. This summer, she and her teachers are working on their ownwith 17 medically fragile students whom they’ve identified as needing the most help. Team TEACH’s educators are working to raise money to keep their summer classes going.
Shanklin-Henderson, who has been in education for 28 years and started teaching medically fragile students in 2012, said chronically ill students need to catch up during the summer months because many have missed weeks of school battling sometimes life-threatening illnesses.
“They can’t go to summer schools — parents in some cases don’t have the funds to help them with tutoring,” Shanklin-Henderson said. “We don’t want them getting to middle school and high school to find out they’re still reading on a second- or third-grade level.”
Houston is a magnet for the families of sick children, with state-of-the art medical facilities and a track record of pioneering groundbreaking procedures. Many, like Zechariah, come from smaller towns and relocate to Houston for months, eventually enrolling in Houston ISD.
Zechariah is from Kirbyville, a small town about an hour north of Beaumont near the Louisiana state line — or as the boy says, “on the border between Houston and Texas.”
He struggled in Kirbyville ISD. His parents said teachers could not always relate to his pain, often punishing him for being distracted in class or for acting out on bad days.
They say Shanklin-Henderson changed that.
On days when the boy would just stare at the hospital room’s TV, Shanklin-Henderson would lift books up to his face and pepper him with questions about the text. She tried nudging without being overbearing. After a few months, Zechariah began to give his undivided attention to the teacher and soon developed a love for science and learning.
Zechariah’s personality grew, as well.
In the lobby of an Extended Stay inn near the Texas Medical Center, the boy rambled excitedly about the virtual plants he was caring for through Shanklin-Henderson’s classes. He yelled into a voice recorder, thrilled to watch the line that measures sound spike with each exclamation.
When a photographer prepared to take a picture of Zechariah, he turned and demanded, “Get my good side.”
He paused, twisting one of his curly locks of blond hair.
“Oh wait, I don’t have a bad side,” he quipped.
When asked about being sick, though, Zechariah grows uncharacteristically silent, burying his head in his arms.
His grandparents describe what he cannot: the rare chromosomal defect resulting in cystinosis, which affects his growth and organs. There was his diagnosis at 14 months, scores of medical appointments, the botched kidney transplant, the feeding tube, the ongoing recovery, the pain, the fear, the uncertainty.
The one constant and bright spot in his life, they say, has been Shanklin-Henderson.
Raine said that with extra help during the summer, she hopes Zechariah will be able to lead a happy and healthy life as he continues to battle his illness.
“They’re willing to learn, they want to learn, they really want to,” Raine said. “It keeps their spirits up, keeps their attitude towards themselves positive.”