Organizers: Miles for Mito 5K a first in Arkansas

Alisha Holloway, from left, Caitlin Fitch, Kerri Hooten and Morgan Henry stand by a banner promoting the Miles for Mito 5K/1K race/walk on Saturday to support the United Mitochondrial Disease Foundation. Holloway, who lives in Vilonia, has mitochondrial disease, as do her two sons and two foster children. The race is being held to raise awareness of the disease, as well as money.
Alisha Holloway, from left, Caitlin Fitch, Kerri Hooten and Morgan Henry stand by a banner promoting the Miles for Mito 5K/1K race/walk on Saturday to support the United Mitochondrial Disease Foundation. Holloway, who lives in Vilonia, has mitochondrial disease, as do her two sons and two foster children. The race is being held to raise awareness of the disease, as well as money.

CONWAY — One of the questions race director Morgan Henry of Conway said she’s been asked about the Miles for Mito 5K scheduled for Saturday is, “Who’s Mito?’”

It’s not a who; it’s a what: mitochondrial disease.

“It’s not a well-known disease, and it affects a variety of organs,” Henry said.

No one knows that better than Alisha Holloway, 41, of Vilonia, who has the disease, as well as her two sons and two foster children.

“It can be a very lonely place. Nobody understands this,” she said. Holloway was diagnosed with mitochondrial disease in 2011, after her children, Jeremy, now 15, and Jeremiah, 7.

“I just remember the absolute loss I felt — I didn’t know what to do,” she said. “I had this piece of paper that said I had it, but that’s all. There was no support group.”

That’s one reason Holloway said she wanted to have the race, to spread awareness and possibly help others get a correct diagnosis.

Holloway and Henry said it is the first race in Arkansas organized to raise money for mitochondrial disease. The proceeds will go to two groups: the United Mitochondrial Disease Foundation and Mito Action.

The race will start at 9 a.m. in Simon Park on Front Street in Conway and will include a one-mile walk through downtown.

Today begins Mitochondrial Awareness Week.

Henry works at Pediatrics Plus Therapy Services in Conway, where she and Holloway were co-workers.

Holloway, a former occupational therapist, had to quit to take care of herself and her family and travel back and forth to Little Rock for constant doctor’s appointments.

“This is a full-time job,” she said of managing the disease.

Mitochondria are specialized compartments present in every cell of the body except for red blood cells, according to the United Mitochondrial 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 foundation’s 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.

Holloway and her husband, Wendell, already had two sons, Jonathan and Jeremiah, and in 2010, the couple were asked about fostering a brother and sister.

The siblings had mitochondrial disease and were in wheelchairs.

“I’d never heard of the disease,” Holloway said.

She did a lot of research before agreeing to take in the children, and the picture it painted wasn’t rosy.

The range of symptoms “varies with the disease; it varies with the part of mitochondria it affects. It can cause gastrointestinal problems. It can cause migraines, loss of motor control, even mental-health issues, any kind of organ failure — it can affect the brain, heart, organs, everything,” Holloway said.

“With us, it’s extreme fatigue — the mitochondria are the powerhouse of the cells,” she said.

“There may be a lot of people who have it, but they may be misdiagnosed,” Holloway said.

The foster children came to live with them in March 2010; Jeremiah was diagnosed a month later.

He was 3, and she’d noticed symptoms since he was 6 months old when he was sleeping 20 hours a day and his muscle tone was poor.

She had him in therapy at Pediatrics Plus, and Dr. Stephen Kahler at Arkansas Children’s Hospital suspected the boy’s problems had something to do with mitochondria.

After Jeremiah was diagnosed, Jonathan was next. Still reeling, Alisha got tested and found out she has the disease.

They learned the disease is passed from the mother — mitochondria is in the egg.

She and her sons have what’s called MELAS, mitochondrial ecephalomyopathy, lactic acidosis and stroke-like episodes.

The Holloways’ foster children have a different kind, called Leigh’s disease.

“They struggle, definitely. Of course, even since they’ve been here, we’ve seen regression in them. But, they just have the best outlook; … it inspires me. They just smile and push through it,” Holloway said.

Holloway doesn’t believe it’s a coincidence that their foster children have this disease, and she believes God brought them together.

“We’re all in the same boat,” she said.

They have to have special diets and take supplements; have a low tolerance to heat and cold, as well as lowered immune-system function; and doing normal activities can exhaust them.

When the mitochrondria are damaged, “it causes an energy crisis,” she said.

Jeremiah, who is in first grade, can get exhausted just standing in line for recess at school.

After school, when kids are going to sports activities, he doesn’t even have the energy to ride his bike.

“Vilonia Primary has just been wonderful to call me and say, ‘Let’s meet,’ to talk about how to help him,” she said.

Jonathan, 15, has had a rough year, she said. Holloway home-schools him.

“I think we’re seeing some regression in him,” she said.

“My boys look like typical boys, but they have so many challenges.

“We’re still learning. Thankfully, [Arkansas Children’s Hospital] started a new clinic called the Neurometabolic Clinic, and it’s neurology and genetics combined,” she said.

“It has been tremendous. I think we had the first appointment when the clinic started. They have been phenomenal; they are so good with the kids,” she said.

Holloway fits in her doctor’s appointments at the University of Arkansas for Medical Sciences. The doctors told her to avoid stress, she said, laughing.

Holloway said she has been blessed with support from the doctors, her friends and Antioch Baptist Church, but the biggest support comes from her husband.

“He’s wonderful, so supportive, but this past year has been very difficult for him. He supports me physically, spiritually and emotionally,” Holloway said. “Our faith is what keeps us going. Without that, we would not have made it.

“I try to imagine, and he even sometimes has said, ‘I know I could lose any of you any day.’ It’s one thing when you have one family member it affects, but to have five?”

Holloway said the race has been her mission since she was diagnosed with the disease.

She said Henry, who is a runner, has been “a godsend” for taking it on.

“It was group of friends who got together and decided it needed to happen,” Henry said.

Preregistration for the race is $20, and the cost will be $25 on Saturday. Sign up at www.runsignup.com/Race/AR/Conway/MilesforMito. Prizes will be awarded.

“Right now, we have 86 people who have already signed up. We’re hoping to have 100,” Henry said. “We’re pretty excited about it.”

Holloway said she and her family will be there participating in the one-mile walk.

“We’re really praying for a good turnout and, for sure, to raise awareness and help other families with this, as well,” she said.

Senior writer Tammy Keith can be reached at (501) 327-0370 or tkeith@arkansasonline.com.

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