Kenley Montes, 11, typically prefers the color pink, but for this week she’s definitely showing a preference for the color green.
Kenley has been living with a mitochondrial disease for most of her young life. 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.
The disease has left Kenley with extremely limited vision, very little energy, frequent migraines, muscle weakness, and most recently she has developed diabetes and kidney problems, said her mother SaBrina Montes.
This week is Mitochondrial Disease Awareness Week and Kenley’s parents, SaBrina and Juan Montes, are doing their best to educate the community and in the process rally support for their daughter.
Mitochondrial Disease Awareness Week is a global awareness effort that is held every year during the third week of September. In addition to all the outreach programs, educational opportunities and fundraising events, the United Mitochondrial Disease Foundation asks people to don the color green in support of those affected by the disease.
The Montes family put out the call and the response has been nothing short of “overwhelming” said SaBrina Montes.
“The support has been coming in from all over the place,” SaBrina Montes said. “It’s been wonderful to see all these Team Kenley pictures. Juan Montes is a fire fighter with the Ceres Fire Department and his fellow firefighters with Ceres Firefighters Local 3636 have been wearing green shirts and started a GoFundMe account to help the family with medical and travel expenses associated with the 11 specialists Kenley sees on a routine basis in the Bay Area. They have a goal of $5,000 and are at $3,009 as of Tuesday afternoon.
It’s not just the fire fighters who have been showing their support for Kenley. Kenley’s school, Walnut Elementary in Turlock, will be decked out in green today and Turlock Dental Care is doing an awareness campaign the entire week. The local Starbucks coffee shops are also sharing information at their stores, said SaBrina Montes.
“It’s been good for Kenley and she feels really supported,” said SaBrina Montes.
The Go Fund Me account is available at www.gofundme.com/teamkenley.