VILONIA — No one could blame Wendell Holloway of Vilonia for being bitter, if he were.
One agonizing diagnosis at a time, his two sons, then his wife, all discovered they had the same genetic disease.
Their two foster children have it, too.
It’s called mitochondrial disease. Each member of the family has a different version, a different experience.
It all has one truth: There is no cure.
“In this situation, you can’t afford to lose a moment of life grieving, or you’ll miss it. You have to live it to the fullest. In another moment, in another hour, another day, it might be gone,” he said.
One thing the Holloways want is for people to understand the disease.
Today begins National Mitochondrial Disease Awareness Week.
Last week, the Holloways met Charity Luyet of Conway and her 5-year-old son, Samuel, who also has the disease.
Alisha Holloway said it is good to know someone else who understands what it is like to live with the disease.
Alisha, 40, and Wendell, 42, met at the University of Central Arkansas in Conway and were married in 1994.
She couldn’t get pregnant, and they tried fertility treatments.
“It just made me really ill, and I just prayed about it and said, ‘If that’s God’s will, it’ll happen. If not, we’ll pursue other avenues,’” she said.
About five years into their childless marriage, Alisha had a bad car wreck on the way home from work one night in her job traveling as an occupational therapist.
“I fell asleep at the wheel,” she said. “I was just really sore.”
In the middle of the night, she started having pain and was taken to the emergency room, where doctors gave her a pregnancy test prior to taking X-rays. To the couple’s shock, Alisha’s pregnancy test was positive.
Her doctor told her she would probably miscarry, but Jonathan, now 14, was born in 1999.
“I was thrilled, surprised, very thankful — felt very blessed,” she said.
The Holloways became foster parents, too.
Their first “big assignment” was a 10-year-old boy who wasn’t supposed to live 24 hours when he was born. He had muscular dystrophy and had been bedridden so long that he had severe scoliosis, was on a ventilator, and his only way of communicating was to blink.
Still, he was smart and aware, Alisha said.
It was exhausting giving him 24-hour care; the nurses who came to the house didn’t always know what to do, she said.
The Holloways were often up all night and their own health was negatively affected, but they didn’t want to give the little boy up.
When he was in the hospital at one point, someone suggested an out-of-state facility where he would receive 24-hour care, and he lived there until he died.
The Holloways had him nine months, “and we loved him like he was our own,” Alisha said.
They also fostered a little girl who had a traumatic brain injury. After she went back to her mother, the couple took care of a newborn for an adoption agency.
Alisha said she needed a break, but it didn’t last long.
When Jonathan was 8, she found out she was pregnant again — with Jeremiah, who is now 6.
As an occupational therapist at Pediatric Plus Therapy Services in Conway, Alisha knew when things weren’t right, and her motherly instincts kicked in, too.
At 6 months old, Jeremiah was sleeping 20 hours a day, and his muscle tone was poor.
Doctors thought he might have muscular dystrophy, but a genetics doctor at Arkansas Children’s Hospital, Dr. Stephen Kahler, eventually mentioned that he suspected Jeremiah’s problems had something to do with his mitochondria.
Mitochondria are specialized compartments present in every cell of the body except for red blood cells, according to the United Mitochondria Disease Foundation. Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth.
The disease can be inherited or caused by spontaneous mutations of DNA, according to the website.
Mitochondrial disease appears to cause the most damage to the cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. The disease can be mild or fatal.
Jeremiah, then 18 months old, was in therapy at Pediatrics Plus in Conway and was making some progress.
Wendell said any illness, even a cold, affected Jeremiah more than other children, and he had no energy.
About that time, Alisha’s mother, who is in the foster-parent program, told the Holloways about a brother and sister who needed a home.
They were in wheelchairs, and they had a mitochondrial disease, Alisha said.
“In all my years of therapy, I’d never even heard of that,” she said.
Jeremiah was sick, and she and Wendell didn’t think they could do take the foster children.
“I kept praying about it, and I couldn’t sleep,” Alisha said. “It was like I couldn’t get them off my mind.”
The Holloways took their two boys to meet the children, though, who were staying at a temporary home.
“It was just an immediate connection,” she said, “with all of us,” Wendell added. “When we got back in the car, we were all in agreement we had to bring these kids home with us.”
The siblings came to live with the Holloways in 2010.
“It was just a whole new world,” Alisha said.
The Holloways researched the foster children’s disease.
“Wendell and I started researching, and of course, everything we found on the Internet was horrible; it is a progressive disease, and there’s nothing very good about it,” Alisha said. “It can be fatal.
“Their speech is very slurred — almost like children with CP (cerebral palsy). Their disease had already progressed to the point where they were already wheelchair bound. Our foster son can get around some; our foster daughter cannot,” Alisha said.
They took Jeremiah to an appointment about a month after getting the foster children, and his test results came back that he, too, had mitochondrial disease.
“It’s is such a rare disease; the doctors are interested,” she said. “Two doctors would leave the room, and five would come in. It was a very overwhelming day,” she said.
Wendell said in their research, they learned it is passed from the mother.
“You get all mitochondria from the egg,” he said.
“At that point, I began to be concerned for Alisha’s health and for Jonathan’s health. We decided we needed to have Jonathan tested; later we would have Alisha tested,” he said.
A year after Jeremiah was diagnosed with the disease at age 3, Jonathan’s test came back positive, too.
“Now I had all four kids who basically had the same disease, but they’re all different,” she said.
“It was devastating, yes ma’am,” Alisha said.
She wanted to know about herself.
As they feared, she had the genetic disorder.
“I have the MELAS,” she said. It’s an acronym — Mitochondrial ecephalomyopathy, lactic acidosis and stroke-like episodes.
“It affects so many things, you can’t put it in a word; it has to have an acronym,” Wendell said.
Their boys have MELAS, too.
“For years, there were things I’d noticed and thought, ‘That’s just not right,’” Wendell said about his wife.
“Since 1994, I had noticed that she would work around the house and be busy until 8 or 9 o’clock and pass out somewhere — just conk out on a chair, couch, floor — and that’s where she was till morning,” he said.
“After we got the diagnosis, it all started making sense. Her energy levels were depleted,” he said.
Alisha said she suffered from “really bad migraines” through her teenage years.
“I wouldn’t sweat; I’d get overheated very easy when I exercised,” she said.
Since her diagnosis in 2011, she’s had some problems with her heart and goes to a doctor at the University of Arkansas for Medical Sciences.
The research for the couple’s foster children helped prepare the Holloways to handle their boys’ diagnoses, they said.
“We definitely feel this is not a coincidence, that God brought them to us,” Alisha said.
“Even though we’re all different, we all have to have adequate nutrition. We have to stay hydrated, take medicine to help with our energy,” she said. They all are intolerant to extreme heat or cold, too.
“The odds are pretty high — to be a family who has the disease and also to be fostering somebody who has it. … I would think that’s a unique God-designed situation,” Wendell said.
Alisha said their foster children are happy.
“They’re the sweetest — even though they have so many challenges,” she said. “It gives us great joy to help them through their struggles.”
“They’re so appreciative of our love and affection,” Wendell said.
Alisha said it is exhausting just getting them to school every day.
“I lift them, load them, change their diapers, get them in the van,” she said.
Their foster daughter has more problems than their foster son.
“She’s smiling all the time; her smile lights up the room,” Alisha said.
“They’re so perceptive, and they can tell if I’m not feeling good, she said.
“My foster son always massages my shoulders when I’m carrying him to the car,” she said.
He’s smart and makes all A’s, she said, and it’s hard for him because he realizes that he’s not like his peers.
Alisha praised Jeremiah’s and Jonathan’s schools, Vilonia Primary and Conway Christian, for being responsive to the boys’ needs.
“Jeremiah has had some struggles. … Getting through a day for him is hard – just sitting up in the chair or walking to class. He tires himself on the playground. … In the evenings when he comes home, he’s exhausted,” she said.
Wendell said people often don’t understand that their oldest son is sick.
“When you look at him, he looks like a normal healthy teenager,” Wendell said. “We’ve had that from a few other folks — they think, ‘There’s nothing wrong with you; you’re making this up.’ It’s just frustrating.”
Alisha said many of her friends don’t know she has the disease, either.
“I try to keep my focus on the kids,” she said. “There are days we feel good; there are days we feel horrible.”
Wendell said Alisha was bringing in groceries and went down the street to talk to neighbors. She explained their disease and told them to call 911 if they saw her or one of the boys unconscious.
”Before she finished talking to them about what they needed to do, she passed out. They knew what to do,” he said.
The Holloways’ church family at Antioch Baptist Church offers to help, but sometimes there’s just nothing anyone can do, she said.
“We know when we started this journey, even when we got Jeremiah’s diagnosis, there was no support,” Alisha said.
“There was no mom for me to call and say, ‘OK, I hear you have this; what can I do?’
“It was a lonely, lonely place. You’re going through so many emotions of sadness, anger, grief,” she said.
“There really needs to be a support group,” Wendell said, started by “somebody who has a heart for it, somebody who has the time for it.”
He doesn’t waste time feeling sorry for himself.
“I started praying for a wife when I was 5, OK? I married her when I was 23, so there’s no way I can look at it that way. She’s the answer to my prayers, the woman of my dreams. She’s the one I waited for all that time.
“Those two boys are the blessings of my life,” he said.
“Yes, life is full of struggles, and it’s difficult, and I really can’t look around for inspiration from other people and how they deal with it. I have to rely on God to give me strength to be the husband that Alisha needs … and to be the father they need me to be. It doesn’t matter how hard it is; that’s my calling. That’s my heart’s desire.”
Senior writer Tammy Keith can be reached at (501) 327-0370 or tkeith@arkansasonline.com.