Hardships still not stopping Cabot boy

By Lisa Burnett Originally Published July 14, 2013 at 12:00 a.m.
Updated July 12, 2013 at 9:57 a.m.
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Nick Hillemann

Ben Huffmaster and his mother, Jody Huffmaster, play on a trampoline. Ben is one of only 170 people in the world with chromosome 18q deletion syndrome.

After being told that her newborn son Ben was healthy when he was born, Jody Huffmaster breathed a sigh of relief on April 30, 2007.

Ben, however, quit breathing three times during his first night in the world.

The next morning, his doctors told his mother that her child had a cleft palate and a clubfoot and would be sent home with a special bottle and an apnea monitor.

An hour later, an Arkansas Children’s Hospital helicopter was on its way to St. Bernards Medical Center in Jonesboro to take the child to Little Rock.

“Ben was diagnosed with chromosome 18q deletion,” Huffmaster said. “This means that he is missing part of the long arm of the 18th chromosome.”

Huffmaster said there are only 170 cases of chromosome 18q deletion in the world. Ben’s cleft palate and clubfoot are part of his disorder, along with ear atresia.

Explaining, his mother said her son was born with ears, but his ear canals lead straight to bone. Her son had no eardrums and was unable to hear.

Ben had surgery to construct an ear drum, enabling him to hear for the first time at age 5.

“Ben is nonverbal, he doesn’t really eat by mouth, he has a developmental delay, and he has asthma,” Huffmaster said.

These are the main problems Ben faces with 18q deletion, she said.

Last year, Huffmaster and her husband realized their son had a lot of self-stimulatory behavior (repetitive body movements) and he would rock back and forth while he was sitting watching movies or playing.

“He didn’t notice other people in the room, and I talked to his teacher about having him tested for autism,” Huffmaster said.

Her son is now 6 years old and was diagnosed with autism in December.

Ben has faced many hardships in his life, Huffmaster said, but he’s always reacted positively to two things: water and animals.

“He has a different demeanor with animals,” Huffmaster said.

This put an idea in Huffmaster’s head late one evening.

“One night, I sent a text to [Ben’s] teacher and asked about a service dog,” Huffmaster said.

His teacher explained to Huffmaster that Ben would benefit immensely from a service dog.

The family then started researching service dogs trained specifically for autism and discovered that the animal would cost them $13,000.

The Huffmasters looked to a man in Morrilton who trains service dogs and took a dog for a test run with Ben in the local Walmart.

The dog was tethered to Ben, and his father, Andy, held the leash to guide them, she said.

“He stayed right with the dog,” Huffmaster said. “My husband and I left the store in tears.”

The two were so happy that a task such as going to the grocery store was able to happen without Ben getting upset or running away.

The dog would allow the family to go to the local grocery store or out to eat without the threat of Ben potentially getting lost.

Huffmaster said that as Ben has grown older, instances of him running away have become more common.

Huffmaster said Ben’s autism causes him to react when he doesn’t get what he wants, and the dog would be trained to prevent and lessen the intensity of his adverse reactions.

“The dog would be trained to apply pressure to Ben,” Huffmaster said. When the dog applies pressure, Ben’s fit would cease or lessen, she said. “The dog can sense when a meltdown is about to happen, and the pressure makes Ben feel safe.”

The family held a bake sale at their church, Faith Missionary Baptist Church in Cabot, to raise money for the dog.

“We raised $2,000 in just one Sunday,” Huffmaster said.

The Huffmasters’ church has formed a committee to raise money for a service dog and is planning a benefit concert and a car wash to raise funds. The family has put a down payment in place for the dog and hopes to have it by Christmas this year.

“Before the dog comes to us, it is trained for a year and a half,” Huffmaster said.

She said the dogs are specifically trained for autism, and Ben’s dog will be trained with his scent, so if he runs away, the dog can track the child.

“Ben has brought us closer as a family,” Huffmaster said.

More information about the Huffmaster family is available at www.abuddyforben.com.

Staff writer Lisa Burnett can be reached at (501) 244-4307 or lburnett@arkansasonline.com.

Online Reporter Lisa Burnett can be reached at 501-378-3887 or lburnett@arkansasonline.com.

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