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Lancaster boy’s battle with rare genetic disorder a tale of medicine and miracles

aburriss@heraldonline.com

Evan Harris sat on the floor – “criss-cross applesauce” style – impatiently waiting to run, jump and play basketball.

Hearing the click of a camera, his attention immediately focused on the photographer. Evan, nicknamed “Sugarlips,” smiled.

Leaning against the wall in the shadow of a corner was Evan’s mom, Octavia Beola Harris, known to all as simply, “BJ.”

Even in the shadows, her eyes showed signs of relief and hope. “I have,” she said with a slight catch in her voice, “my child back.”

Weeks earlier, BJ and her husband, Brian, were reeling after doctors told them Evan may never walk or talk, and that he may never show signs of his personality.

On Friday, Evan left Levine Children’s Hospital, not in a wheelchair as some patients are required to do, but walking. It was his latest steps in a journey of medicine and miracles.

A normal boy

Like most of the 8-year-old boys at North Elementary School in Lancaster, Evan likes to play sports, ride his bike, and just be outdoors. At home he is “momma’s baby, but he is daddy’s boy,” BJ said.

Back in April, he was a very sick boy.

On April 20, a Monday, he complained to his teachers of a stomach ache, and his parents came to school and took him home. For the rest of the day, he infrequently vomited, Brian said.

He stayed home Tuesday and didn’t improve. That night, before Brian and BJ went to bed, they decided if Evan wasn’t better in the morning, they would take him to a doctor.

They never got the chance.

At about 1:30 a.m. Wednesday, Evan screamed.

“It was something I’ve never heard before,” BJ said, “and will never forget.”

BJ and Brian rushed to their son’s room.

“The scream wasn’t like he was hurting, it was more a cry for help,” Brian said. He grabbed Evan, holding him in his arms, hoping to get him to stop screaming.

“He was in a daze,” Brian remembered. “He was looking at me, but he looked through me. He couldn’t see me. His eyes were not blinking.”

Then, in a small voice, Evan repeated, “I’m good, I’m good,”

Those were the last words BJ and Brian would hear from their son for weeks.

Hospitals

They took Evan to the emergency room at Springs Memorial Hospital in Lancaster. Fortunately, they were the only ones there and immediately saw a doctor.

The doctor ran tests which were inconclusive. He decided to test the ammonia level in Evan’s body. That test was the first sign that Evan was sick, very sick. His ammonia level was about 650 micrograms per deciliter. The normal level for a child is between 40 and 80.

Evan was immediately transported to Levine Children’s Hospital in Charlotte.

The Harris family discovered that night was just the start of what they believe has been a journey of miracles. Doctors said Evan’s ammonia level was so high he should have been unconscious at home, unable to scream. BJ and Brian also learned the ammonia test is not a routine test conducted in emergency rooms.

“The doctor,” Brian said, “saved my son’s life.”

Rare disorder

Evan arrived at Levine Children’s Hospital between 7 and 8 in the morning. Doctors repeated the ammonia test, which read 850.

Tests showed his liver and kidneys were functioning fine. These organs are most affected – and likely to fail – by high levels of ammonia, doctors said.

The body creates ammonia when bacteria in the intestines and the body’s cells process protein. The body turns ammonia into an amino acid called glutamine and a chemical compound called urea. The intestines and the kidneys absorb glutamine. Urea flows through the kidneys and is eliminated via urine.

When the liver and kidneys showed no damage, doctors considered the possibility that Evan had a rare genetic disorder called OTC where the body is missing an enzyme that helps removes ammonia from the blood.

OTC affects about one in 80,000 children, according to most medical estimates. The number could be lower, said Dr. Tobias J. Tsai of Levine Children’s Hospital. It could be 1 in 20,000. Regardless of the ratio, the consequences can be seizures, breathing difficulties, and possibly death.

The doctors performed dialysis to detoxify Evan’s body. They gave Evan blood transfusions. They gave Evan medicine that acted like a scavenger, searching throughout his body for ammonia and removing it.

But they couldn’t get his brain to settle down. An effect of OTC is that it overstimulates the brain, and pressure had increased on Evan’s. They tried a brain stent to relieve pressure. It didn’t work. Finally, they removed a portion of the left side of Evan’s skull to relieve pressure and put him in a medically induced coma.

Faith

While the doctors treated Evan, BJ cried, and prayed.

“I was a complete and utter mess,” she said.

In July, BJ had lost her stepmom, Laverne, to cancer. In September, her dad, Larry, died from liver cancer. In November, Brian’s mom, Sherril, also died from cancer.

As she prayed she told God, “I’m BJ, not Job.”

Brian was praying too, even shouting at God. He was still grieving over the death of his mother. “I was angry at God,” he said, “I had turned my back on my church and my friends.”

Nonetheless, the Rev. Anthony Pelham of the Faith, Hope and Victory Church of Lancaster rallied his members to help one of their own.

They came to Charlotte to pray with the Harris family.

It was at one of these meeting that Brian cried out. Maybe not as loud as his son’s previous cries, but a cry for help nonetheless.

“I cried to God to ask for forgiveness,” Brian said. “I cried for my disbelief and (distrust).”

On Sunday, four days after his son’s screams, Brian walked around the hospital, listening to gospel music on the Pandora internet radio service.

“God then told me to look up what Evan’s name meant,” Brian said. A quick Internet search showed that Evan in Hebrew meant rock; in Celtic, it meant young fighter; and in Welsh, one God has shown favor to.

“I had a new spirit after that,” Brian said.

But then came a difficult meeting with doctors. They explained the frontal lobe of the brain not only controls the body’s motor functions, but also cognitive functions such as language, problem solving and judgment.

BJ and Brian recoiled when they repeatedly heard: your son may never, your son may never, and finally, your son may live the rest of his in a vegetative state.

“It was the lowest point,” BJ said. “The biggest battle for me was that he may never be himself, not know us.”

BJ again turned to God.

Trust

While BJ says she had been a spiritual person, “I never had to trust him like this.”

She prayed for God to let Evan be normal.

God’s response, she said, shocked her.

“Don’t ask me for normal,” were God’s words, BJ said. “I’m not a normal guy.” She said God told her to prayer for something extraordinary.

“I started to praying for better things,” she said. BJ wanted her son to leave Levine Children’s Hospital, whole and restored.

“When it came to the points where I couldn’t go on, God showed me something miraculous. God is awesome,” BJ said.

As Brian and BJ prayed so did the members of Faith, Hope and Victory Church. Pelham shared with them everything the Harris family shared with him. The prayers drew the church closer to together, reminding them of the power of prayer, he said. “It also, strengthened my faith.”

After Evan came out of the medically induced coma, the reality of his condition hit BJ hard. Her son was an infant all over again.

Therapist Emily Deering started working with Evan. Her initial hope was she could get him to hold his head up, maybe stand a little, and to prepare him for life in a wheelchair.

The Harris family – and the church through Pelham – started celebrating every one of Evan’s victories – the first time he could raise an arm and the first time he opened his eyes.

One morning, BJ – who had been staying at Levine with Evan – turned to her child and said, “Hey, baby.”

“Hey,” Evan replied in a small voice, the first word he had spoken since the scream that night at home.

As the pace of Evan’s recovery quickened, Deering found herself constantly rewriting her therapy plan.

I’m Lebron

Evan’s therapy got more complex as the staff at Levine worked to restore his motor skills and reteach him everything he had learned. Part of the plan was getting Evan to shoot baskets in the hallway of the fourth-floor of the hospital’s therapy section.

Deering held a safety belt around Evan’s waist as he starting shooting. Shot after shot swooshed through the net. Asked who he favored, Lebron James or Steph Curry, the stars of the NBA Finals, Evan loudly proclaimed: ”I am Lebron. He is someone else.”

Evan’s shots continued to zip through the net while Deering’s clanged off the rim. With every miss, Evan chimed, “brick.”

Leaning the corner, BJ savored every moment. “Each day I see more and more of him,” she said. “This is my miracle”

Back home

Although Evan returned home Friday, a long recovery awaits him. First his skull must heal. Then he faces more therapy to improve his motor skills, speech therapy to help him with his words and occupational therapy for everyday challenges.

“We want him to be safe and to find ways for that work for family without disrupting the natural flow,” Deering said. “We want to keep it safe and fun, and continue to find ways to challenge him.”

Dr. Tsai said part of Evan’s long-term treatment is watching his diet. Because OTC is a genetic condition, his 11-year-old brother Brice and 4-year-old sister Riley may also be tested for OTC, BJ said.

The family also must get to Evan’s bucket list. His dad told him he could do three things when he came home, anything he wanted.

He wants to: ride his bike, go to the beach and go to church.

The bike ride will require some special care as Evan is easily distracted and could be hurt if he falls. With the right precautions it should happen soon, BJ said.

The trip to the beach will come later this summer.

But the homecoming at Faith, Hope and Victory Church should happen Sunday.

Amid the joyous occasion, Brian and BJ will take time to offer their prayers of thanks.

“Hope is overwhelming,” BJ said. “I can trust God in everything.”

Don Worthington •  803-329-4066

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