Ten-year-old Turlock resident Kenley Montes is ready to take a walk.
The Walnut Elementary student will be leading about 20 friends and family members on a one mile walk Saturday as part of the 4th Annual Energy For Life Walkathon in support of the United Mitochondrial Disease Foundation. And for someone like Kenley, who has been diagnosed with a mitochondrial disease, one mile is no easy task, but this vivacious and eloquent young girl is ready for the challenge.
“I’m excited for it,” said Kenley. “We’re all wearing green shirts that say ‘Team Kenley’ on them, though I wanted one of my favorite colors like pink, orange, or red.”
Mitochondrial disease effects specialized compartments in every cell in the body, except for red blood cells. It’s responsible for creating about 90 percent of the energy needed for the body to grow and sustain life, but in the disease, that process of developing energy is never fully realized.
When Kenley has to explain it, she has a very appropriate analogy at the ready.
“I tell them it’s like trying to run everything in your house on just one battery,” she explained.
Mitochondrial disease is a chronic illness that comes in many different forms. Symptoms of mitochondrial disease include poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, migraines, learning disabilities, and heart, liver, or kidney failure.
“Mitochondrial diseases kill more kids than childhood cancers, but most people are not aware of it,” said Kenley’s mother SaBrina Montes.
Kenley’s diagnosis with Kearns-Sayre Syndrome, a rare progressive multi-symptom mitochondrial disease, came last fall after years of growing symptoms, especially worsening vision. The disease is genetic but can, like in Kenley’s case, just spontaneously appear.
Kenley’s first sign was a droopy eyelid at birth, but by age 6 months it had disappeared. It returned when she was two years old and at age five she had her first surgery to lift the lid. The surgery didn’t take and she had to go under the knife again. This time the results lasted about a year, before it started to droop again. She also was experiencing dizzy spells, migraines, and stomach problems that would leave her weak and sick for weeks at a time. She was tired easily and was no longer hitting the growth milestones.
SaBrina and Juan Montes continued to take their daughter to see more doctors and undergo more tests, but the answers were yet to be found.
By the time Kenley was in third grade, the droop had left her eyelid just barely open and she was experiencing a loss of vision at a fast pace. She underwent another surgery and it was a success, until the other eyelid starting drooping. She was given another test, which finally gave the family an answer, albeit one they hoped never to hear.
“It was the worst possible thing we could hear,” SaBrina Montes recalled. “It was an answer we did not want, but it is where we have been placed.”
“It was very difficult to tell her she has this disease that has no cure,” said Kenley’s father Juan Montes, a Ceres firefighter. “We had to tell it to her like she was an adult and explain that there’s no cure for it, but maybe one day there will be. It’s hard telling a kid that they’ll lose their vision one day.”
Currently, Kenley uses a walking cane to help her navigate, but she hasn’t let the disease keep her from doing two of the things she loves the most — drawing and playing with her American Girl dolls, the first of which she got as a bribe for undergoing her first surgery.
“She is always wearing a smile which pulls us along with her,” SaBrina Montes said.
The family is making their inaugural steps in the Bay Area walkathon to help raise awareness and funds in the hope that one day a cure may be offered to their daughter. Donations can be made through the Energy For Life website at http://www.energyforlifewalk.org/.