This SC family worries that mask-less schools could kill high-risk children like theirs

Halle Ching is 11.

She has the rarest of rare genetic disabilities, so rare it doesn’t have a name.

She can’t walk or talk. She has battled epileptic seizures and pneumonia time and again and came close to dying twice, including an episode in January. She has heart problems, and her immune system is compromised.

Now, her family fears a new enemy — schools in which no one is wearing a mask amid the rapidly spreading delta variant of COVID-19. Halle’s doctors say COVID would likely kill her.

A proviso tacked onto the South Carolina state budget essentially prevents schools from mandating masks, which help stop the spread of COVID-19. If schools go against the mandate, they could lose state funding, which in the case of Greenville County, where Halle lives, could mean as much as $300 million.

Halle will not return to school, but her two brothers will. Anders, Halle’s older brother, is in middle school; Evan, her younger brother, is in elementary school.

“I feel so sick about it, that we can’t be more reasonable,” their mother, Cathy Stevens said. “I hoped there would be more empathy.”

A family is created

Stevens and her husband, Erik Ching, both work at Furman University. She works in the Riley Institute, specializing in policies to support after-school and summer programs across the U.S. He is a history professor.

They married in 2004. Anders was born in 2008, Halle in 2010. Halle was premature, but her medical challenges were not immediately apparent, Stevens said. At her two-month well check, the doctor noted she wasn’t making eye contact. Her arms were stiff.

Stevens and Ching thought perhaps it was because Halle was born more than a month early.

At Halle’s eight-month appointment, the doctor ordered a muscle biopsy and learned her problem stemmed from a dysfunction of mitochondria, essentially considered the energy producers for the body.

Finding the specific gene that mutated didn’t come for many more years. Stevens said there are 24 children in the world known to have the same condition.

The community rallied around the little blond girl. Medical professionals, caregivers, family, friends, colleagues, all supported the family. They took turns watching her, helping her. Halle was in studies at Emory and Duke in addition to the care she received at Prisma Health Children’s Hospital and MUSC.

There were so many supporters, Stevens started a blog to keep them informed of Halle’s progress.

For a time, Halle went to a Greenville County public school for children with disabilities.

There are many things Halle can’t do, but Stevens focuses on the things she can. Like sticking her tongue out when she’s hungry, crying when she hurts.

She loves music, television and cuddling. Often when the parents are cooking supper they will look into the den and see Anders and Halle snuggling on the couch.

“She’s such a fighter. She has a will to be part of this world,” Stevens said.

A community reacts

Stevens said so many people have fought for and beside Halle for so long, she is dismayed it could all be undone by a state mandate against mask wearing.

Yet, she knows South Carolina schools have little room to operate under the budget proviso. Besides mask wearing, the mandate also restricts the number of children who can take part in full-time virtual learning and the number of days schools can use e-learning, and it requires that schools operate in-person full-time and at full capacity.

Stevens wrote a letter this week to the Greenville County school board not only to criticize the no-mask plan but also to offer some suggestions on things the schools could do: Lunch outside with help from parent volunteers, outdoor physical education and music, a hepa air filtration system, surveillance testing and screening for asymptomatic cases, at-home learning not just for students who have to quarantine but also for student whose parents think it is unsafe to send their child to school.

“Encouragement on the part of the district to mask in high-volume, high-risk situations and kindness towards those who mask all the time for various reasons,” she wrote.

Anders, who has been vaccinated, and Evan, who is too young to be, will wear masks in support of their sister.

Tim Waller, spokesman for the Greenville County schools, said he hopes as school gets underway Aug. 17 principals will find creative ways to manage whatever spread may come.

Some 74,000 students will return to school in Greenville County, the state’s largest school district and one of the last to have all its students return to classrooms last year due to inability to maintain social distancing in high schools.

“It’s not just Halle,” Stevens said. “There are many families with elderly people in the home, people with cancer, compromised immune systems.”

She called these families a strong minority whose lives are just as important as anyone else.

“The small sacrifices of extra precautions while this virus makes its way through our world are (in our humble opinion) worth it to keep Halle and the many, many others like her as part of our community,” she said.

This story was originally published August 6, 2021 at 5:00 AM.