Philo couple raising money to fight disease that killed daughter

PHILO – Luke and Leslie Kirby are radiant with pride when they remember their beloved daughter, Raley, as a baby with big, blue eyes who loved naptime with her daddy.

"She was just so beautiful," Luke said. "It was amazing."

The Kirbys' time with their daughter was cut short, however, by mitochondrial disease, which claimed the life of the 7-week-old girl June 13.

In the midst of their grief, the Kirbys decided to turn their tragedy around to help others. They have organized a 5K run/1 mile walk called Run 4 Raley, the funds from which will benefit the United Mitochondrial Disease Foundation.

So far 67 people – about two-thirds walking – have registered for the event, which will be held rain or shine.

The Kirbys want to raise awareness of mitochondrial disease.

"We had never heard of it before Raley was diagnosed," Leslie said.

According to the United Mitochondrial Disease Foundation, mitochondrial disease occurs when the mitochondria in a cell fail, creating less energy. If the process repeats throughout the body, affected systems fail. That can lead to permanent cellular injury or death.

Mitochondrial disease primarily affects children, though there are documented cases of adult onset of the disease.

The disease causes the most cellular damage to the brain, heart, liver, skeletal muscles, kidney and endocrine and respiratory systems, according to the United Mitochondrial Disease Foundation.

The foundation estimates that every 15 minutes a child is born who will develop mitochondrial disease by age 10, but exact numbers are hard to determine.

"A lot of times it's misdiagnosed or not (diagnosed) at all," Luke said.

Symptoms are dependent upon which cells are affected and may include loss of motor control, gastrointestinal disorders, poor growth, cardiac and liver diseases, diabetes, seizures, developmental delays and susceptibility to infections.

In Raley's case, it became apparent something was wrong shortly after she was born April 26.

"The day after she was born, she was lethargic and not feeling well," Luke said. "We still don't have a definitive diagnosis."

Doctors did numerous tests on Raley to try to find the problem.

"They took her to the neonatal intensive care unit, and she actually progressed quite well," Leslie said.

Raley came home and things seemed to be taking a turn for the better.

"She had bright eyes and was a normal baby," Luke said.

But after two weeks, the couple's hopes were dashed when Raley started experiencing apnea. The Kirbys rushed her to the hospital, and then decided to transfer her to St. Louis Children's Hospital.

"It's hard to treat something when you don't know what it is," Leslie said. "It's such a hard thing to research because the doctors themselves don't know a ton about treating it. Everything's so vague."

There are no cures for mitochondrial disease, but vitamin and enzyme therapies can help reduce symptoms or stop the progression of the disease.

"We just did what we could and made sure there was no pain involved ever," Leslie said.

Raley is never far from her parents' thoughts.

"Her strength inspired us and still is," Leslie said. "She was so strong for being so small."

The Kirbys hope that they can save other children from suffering and families from heartache.

"What she had to go through, I don't want anyone else to have to go through," Luke said. "It's really frustrating when you go to the doctor and everyone tells you, 'We don't know.' We don't want parents whose children are afflicted with this same thing to feel as helpless as we did."

The Kirbys plan to make the upcoming event an annual one, and future runs will be held on Raley's birthday.

"This isn't going to be a one-time deal," Luke said. "Hopefully it will get bigger and bigger."

Leslie hopes that the T-shirts that run participants will receive will help spark conversation about the disease. She said the blue-and-white wristbands that the family started wearing from the St. Louis Children's Hospital when Raley was sick did just that.

"We had people at Raley's service say, 'What's with all the bracelets?'" Leslie said.

"By someone participating, it's also helping spread the word, which means a lot," Luke said. "I don't think people realize what a difference they can make."

If you go

What: Run 4 Raley 5K run/1 mile walk

When: Registration begins at 8 a.m., and the race/walk will start at 9 a.m. on Aug. 2 (rain or shine)

Where: Hale Park ball diamond on North Harrison Street in Philo

Admission: Cost to participate is $20 in advance or $25 the day of the race, which includes a T-shirt and wristband. Registration forms are available at the Philo Exchange Bank, located at 102 W. Washington St., Philo. All revenue will benefit the United Mitochondrial Disease Foundation.

Information: Send an e-mail to lkirbo35@comcast.net

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