Kenley Montes, the young Turlock girl who inspired her peers and the community at large by her determination to live a full life despite dealing with a rare genetic disorder, died on Friday. She was 13 years old.
Kenley is survived by her parents Juan and Sabrina Montes and a younger brother.
Kenley was diagnosed with a mitochondrial disease known as Kearns-Sayre Syndrome. The diagnosis came after years of growing symptoms, especially worsening vision. The disease is genetic but can, like in Kenley’s case, just spontaneously appear.
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.
The chronic illness 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.
When asked to explain the disease, Kenley would say it’s like trying to power all the electricity in a house on a single battery.
The disease took Kenley’s vision, limited her mobility, left her with migraines, kidney issues and diabetes, but she kept her spirit strong. In the last week she was admitted to the intensive care unit at UCSF Medical Center as the disease progressed.
Kenley was a Mito Warrior and she and her family took any opportunity to raise awareness and funds to fight the disease.
The Ceres Firefighters Local 3636, of which Juan Montes is a member, said of Kenley on their Facebook page: “She always has a smile and walks this journey with grace.”
Kenley was in eighth grade at Turlock Junior High School. She previously attended Walnut Elementary. She was a lover of animals, American Girl dolls and drawing.
Funeral services are pending. A Go Fund Me campaign has been started to help the family with funeral expenses. The link to the campaign is https://www.gofundme.com/kenley-montes.
