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Inspiration in a small package: one boy's journey

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By Rachel Johnson, Staff Writer

SHALLOTTE—He may be 9 years old, but he’s endured more than most people will in a lifetime.

Christian Huffman is a walking miracle—and his family knows it.

The third-grade Union Elementary School student has a rare medical history. At just 22 months of age, he was bit by a copperhead snake.

The youngest of Craig and Judith Huffman’s three sons, Christian was treated locally with anti-venom and airlifted to a hospital in Chapel Hill for treatment.

“I thought that was the scariest thing that would ever happen to Christian,” Judith said. “It was a miracle he was OK.”

One year later, Judith recalls she was getting the family ready to go camping on Labor Day weekend when she found Christian lying face down on the floor.

“At first I thought it was a strange way for him to take a nap, and then I realized his eyes were open, he was twitching and he didn’t respond,” she said.

Judith had never seen someone having a seizure and didn’t instantly recognize what was happening. She frantically called 911. Christian’s seizure lasted more than an hour.

“Duke (Hospital) flew a medical crew here, and we met them at the Ocean Isle Beach airport,” Judith recalls.

Christian was put into an induced coma while doctors worked to find out the cause of the seizure.

“We didn’t know what we were facing. At first we thought we were looking at brain cancer,” Judith said.

 

Diagnosis and treatment

The Huffmans were told Christian had a brain tumor and he would have surgery the next day, but that never happened. The doctors said it was inoperable.

“We came home not knowing anything but that he had epilepsy,” Judith said.

In the months to come, Christian, then 3, had seizures that lasted 30 minutes or longer once or twice a month. Christian went to the emergency room every time, as his body often wouldn’t respond to medications to stop the seizures. The Huffmans returned to Duke numerous times.

While Christian was still 3 years old, his parents took him to Johns Hopkins Hospital for additional testing.

“We were trying different medications and by the spring/summer, his seizures were worse,” Judith said. “We never knew when he was going to have one. He’d be on the beach, in the car, at daycare.”

In August 2007, Christian had another CAT scan. It revealed his tumor had grown.

“We were so frustrated because we saw him getting worse. His seizures were lasting longer and becoming more frequent. He was unconscious during each one. We knew we needed to do something,” Judith said.

The Huffmans took Christian to the Cleveland Clinic in Ohio. Christian was monitored by a constant EEG machine for 10 days.

“It was our choice, but the only choice, was to have a hemispherectomy surgery,” Judith said. “It is a radical surgery that is only used in extreme cases. He was diagnosed with intractable status epilepsy. Christian had had 19 seizures that year, and the doctor said we could have lost him during any one of those seizures…We witnessed three children die from seizures while we were at the hospital.

“In order to do the surgery, both parents have to be in agreement. It was so hard because our child was perfect. And there were no guarantees it would fix the problem. ”

The surgery removes half of the brain. For Christian, the right side of his brain was removed, causing him to lose function and partial eyesight on his left side.

“We agreed to the surgery, and they were ready to do it then. There is usually a six-month wait while doctors exhaust all other options and medications,” Judith said.

 

Fourth birthday

The Huffmans brought Christian home and celebrated his fourth birthday with a huge party. There were 150 people in attendance, including a magician. A large swing set with slides was installed in the Huffmans’ back yard, and he was able to play on the swings before going into surgery Oct. 25, 2007.

“I think the hardest part was he was normal. It was hard making that decision because we knew it would affect him the rest of his life,” Craig said. “When we look back on it, we would have done the same thing today.”

Christian spent three months in Ohio. Craig and Judith stayed in a Ronald McDonald House and took turns spending the night with Christian in the hospital. Numerous friends and family members from Brunswick County traveled to be by their side. He received packages and mail from home every day. People made “Caring for Christian” bracelets.

Craig still wears the two original ones he slipped on his arm in 2007.

“I have never taken them off,” Craig said.

In fact he has vowed not to take them off until he is sure Christian is OK.

Christian remembers he and his family returned to their Shallotte home just in time for Christmas. They were greeted by a surprise as their friends had decorated their house for the holiday.

Christian’s recovery was difficult for him and his parents. He had therapy four times a day, six days a week. Today Christian continues his therapy once a week.

“He went back to an infant state and had to relearn everything,” Judith said. “It took him two weeks to talk again.”

 

“I will never quit”

Christian will never regain his peripheral vision on the left side or the use of his left hand, shoulder, arm and leg.

The limitations haven’t stopped Christian. He is an active boy who finds a way to do things he wants to.

When surgeons removed the entire right side of Christian’s brain, they found a benign tumor. Doctors thought it caused the seizures.

“We felt like he was going to be seizure-free,” Judith said.

Christian was seizure-free until 2011. That fall, he began having episodes that weren’t initially associated as a form of a seizure.

“He was vomiting out of the blue and having bad headaches,” Judith said.

By February 2012, this was occurring more often and lasting longer. The Huffmans returned to the Cleveland Clinic, where an EEG showed the episodes are actually a type of seizure.

Christian has been back-and-forth to doctors at Duke and Ohio several times. In coming weeks, he will return for further testing.

“It’s all starting over again,” Judith said, as a tear slipped down her cheek.

“He never wants to stop or miss anything even when he’s feeling bad. A lot of times he tries to hide it from us.”

Christian often wears a T-shirt that says it all about his attitude: “I will never quit.”

“He has to work a little harder than most children his age. He teaches us more than we can ever teach him,” Judith said.

It’s the small day-to-day things that show Christian’s spirit. From brushing his teeth to eating lunch—things that usually take two hands. He said his friends and teachers help him a lot at school.

Christian is a typical 9-year-old who enjoys being active. He rides his bike, swings, takes dance classes and plays Wii. He recently joined STRIDE, a running program, and is planning to out-run his parents in an upcoming 5K.

In the future he wants to own a Mercedes-Benz or BMW, take a vacation to Carowinds, see a One Direction concert, dance on a Disney show and become a schoolteacher.

“God made you special. He put no limits on you,” Judith said to Christian as he dreamed up the future.

“It could be much worse,” Christian said, as he barreled down a slide in his backyard.