‘All smiles’: Rock Hill grandparents, nonprofit help boy, 2, fight genetic disorder

Like most new parents, Rock Hill residents Cindy and James Hufford constantly change diapers and get little sleep.

But the Huffords never thought they would be doing all of this in their 60s, especially not for a child as special as their 2-year-old grandson Ryley.

Ryley was born with a rare genetic disorder, a condition in which he is missing genetic material from one of his 46 chromosomes, resulting in scoliosis of his spine, digestion problems and low muscle tone, his grandmother said. Ryley is about seven months old developmentally and weighs just 17 pounds.

After losing weight in the womb, doctors induced Ryley’s birth and discovered he had 1P36 deletion syndrome. Common symptoms include seizures, weak muscle tone and swallowing difficulties.

“We were just devastated,” Cindy said.

Ryley came to live with his grandparents at seven months after being removed from his parents, who had their own set of difficulties. When his mother and father were not able to take care of him, he was headed toward the foster care system, but the Huffords stepped in and were given custody.

So on February 2, 2015, the Huffords, who thought they would be relaxing in retirement, became overnight parents to a challenging baby.

“Our day is pretty much Ryley,” Cindy said. “It’s a 24/7  job.”

Ryley wears a body cast aimed at strengthening his spine. He cannot walk, stand, sit, talk or crawl and he requires constant attention and care.

Due to his condition and being laid on his side for the first part of his life, Ryley’s jaw, sinuses and brain have shifted, Cindy said.

The Huffords are partnering with All Things Possible Ministries, a Fort Mill-based nonprofit focused on medical crises. They want to raise $6,500 for a cranial band helmet that may help Ryley avoid a life-threatening surgery and to purchase a supportive P-Pod chair to aid his digestion.

Medicaid will not cover the costs of these items. A fundraiser is being held on Saturday at a Rock Hill restaurant to help raise money for the medical equipment.

“We’re thrilled the Huffords reached out to us,” said Lisa Sexton, executive director of All Things Possible. “We’re trying to prevent a life-threatening situation, which could easily happen without help.”

Feeding Ryley is one of the biggest challenges due to his malformed pallet, allergies and digestive disorders caused by his condition, James Hufford said. His stomach is small, so meals have to be frequent and he is tube-fed.

“The only thing he wants in his mouth is what he puts in his mouth,” Cindy said. “He doesn’t know what hunger is.”

The couple has tried feeding schedules, but to no avail, James said.

“Ryley doesn’t work that way,” he said. “The whole world is Ryley, and if you don’t believe it is Ryley, then he will let you know it’s Ryley.”

The Huffords have to alternate 12-hour shifts to monitor Ryley and ensure he is fed, an exhaustive endeavor, James said.

“I’ve looked in the mirror and had no idea who was looking back at me,” he said.

The P-Pod chair will give the couple a place to feed Ryley and for him to sit and play without fear of falling over, James said. With the chair, which will mold around him, his grandparents can also push Ryley around instead of carrying him.

Cindy and James are focusing their retirement on helping Ryley strengthen his body, taking him to doctors’ appointments, teaching him sign language and ensuring his safety.

“Ryley has a lot of medical issues, but you know what, the little guy is happy and all smiles,” James said. “He’s a blast.”

This story was originally published November 9, 2016 at 6:34 PM with the headline "‘All smiles’: Rock Hill grandparents, nonprofit help boy, 2, fight genetic disorder."