Child with Rare Genetic Condition Excels in Thornwell’s Early Head Start Program

a father holds a son, who is reaching for a string hanging from the ceiling in a child development center“As a parent, you want your kids to have the opportunity to learn,” said Ricky Huffman, whose two-year-old son is in the early head start program at Thornwell. “You want your kids to excel.”

Huffman said his son, Ash, wasn’t excelling at the daycare he was in before coming to Thornwell. Ash usually picked up a toy and sat in a corner. Or, worse yet, the daycare staff put him in a chair and left him by himself. Regardless, Ash didn’t receive the one-on-one attention he needs.

You see, Ash is one of only 100 people in the world with a condition known as Nicolaides–Baraitser syndrome. He’s the first child in South Carolina with it and the youngest person in the world who has this rare genetic condition that stunts his growth, causes seizures, affects his ability to learn.

Making Progress

Despite having the condition, Ash has grown by leaps and bounds in the few months he’s been in Thornwell’s early head start program. Ash’s teachers design lessons for Ash’s needs, as they do for all of the children in the program. His teachers work with him to help him improve his communication skills. This alone is significant since Nicolaides–Baraitser syndrome affects Ash’s ability to speak.

“But since he’s been at Thornwell, he’s now saying ‘Daddy’ and ‘Mama’ clearly,” Huffman said.

Ash’s teachers at Thornwell also teach him how to use his hands to communicate. Plus, the tables and the toy stations in the room allow Ash to practice his motor skills.

Specialized Care

“The specialized care is phenomenal,” Huffman said. “We watch our son who was struggling, who wasn’t even making a sound, and now he’s making movements with his hands and he’s making sounds. He’s not just silent. That’s a huge thing.”

Ash has specialists who visit him at Thornwell to help manage his condition and keep track of his development. They agree that the two-year-old has progressed since being in the early head start program. In fact, they recognized a difference in how much he was interacting and communicating in the first two weeks he came to Thornwell.

“When you become part of Thornwell,” Huffman said, “hands down, it’s the best  . . . for getting your child early education that will be with them through the rest of their lives.”

Apply Now

The Early Head Start program and the 4K program are two early childhood education programs offered at Thornwell. Both grant-supported programs are free to eligible families, and both are now enrolling.

Please download and print the 2017-2018 First Steps 4K Application (PDF) to apply to the 4K program. For more information about 4K or Early Head Start, please complete the form below or call 864-938-2794.

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