Carmel Valley teen determined to help others with chronic illnesses
A mysterious spider bite changed Kiara Blacher’s life — for worse and for better.
The suffering the Carmel Valley teen experienced from a rare disease resulting from the bite forged in her the conviction to help other children with similar plights.
Now 17 and entering her senior year at Canyon Crest Academy, Kiara formed the nonprofit organization Kids 4 A Cure three years ago to generate money supporting St. Jude Children’s Research Hospital.
“About four years ago, I got a chronic illness which changed a big part of my life and I wanted to try to help other people with similar experiences that don’t have access to the same medical services that I do,” said Kiara, whose family lives in the Torrey Hills community of Carmel Valley.
The pinnacle of the group’s efforts to date was a benefit concert held July 10 in Pacific Beach. Family friends Eli and Michal Ben-Moshe donated the use of their property on Garnet Avenue a block from the beach for staging the concert.
One of Kiara’s chief supporters — her aunt Lisa Traub — expressed pride in her niece’s accomplishments.
“I know Kiara worked hard and endlessly on this past benefit concert and even when all these obstacles came her way she didn’t give up,” Traub said in an email. “In addition, each fundraiser she plans she does so with everything she’s got. And whether a big or small turnout, she pours all her energy and passion into it. She is a very admirable teen, for sure.”
Not only did Kiara organize the show, she played electric bass in one of the four featured bands.
Though schooled in piano and guitar, she did not plan to be in the show. However, one of the bands — Vixi — was set to drop out of the lineup because their bassist was unable to participate.
So Kiara spent a few weeks learning to play enough bass to get through the band’s songs.
“It’s pretty similar to classical guitar (in fingering patterns),” she said of the bass. “I wasn’t used to the bass guitar because I was playing classical (guitar), which has a lot thinner strings.”
Kiara said she started on piano at 3 years old and took up guitar when she was 11, long before the life-changing spider bite.
“I’ve really found music to help me a lot with everything,” she said. “I got very into using it to relieve the symptoms. ... It really helps with my tics. They completely stop when I’m playing music.”
Each of the bands tackled tunes in the classic rock genre. Vixi played ZZ Top’s “Sharp Dressed Man” and Radiohead’s “Creep.” Kiara was surprised that several hundred people attended the show.
The effort, combined with other fundraising activities, helped Kids 4 A Cure secure about $2,000, Kiara said.
A silent auction, which was showcased at the concert, is an ongoing effort that can be accessed at kids4acure.com or on Instagram: @kidsforacure2021.
Kiara said she was motivated to start the charity in the eighth grade when her teachers had a project based on a mantra inspired by Mahatma Gandhi: “Be the change you want to see in the world.”
While an altruistic success, the concert also represents a personal triumph as well for a girl who was temporarily stymied by blurred vision stemming from the disease.
“I definitely have some crazy symptoms,” Kiara said. “For the first two years, I lost the ability to read or write due to double vision. That got better after two years of treatments, but I still get things like seizures, hair loss, brain fog and I developed a tic disorder.”
Doctors diagnosed Kiara as suffering from Bartonella, which is caused by a type of bacteria transmitted from bites of various bugs, such as ticks, mosquitoes and spiders.
Ruling out other causes, her physicians concluded Kiara had been bitten by a spider while she was at summer camp in Northern California. Immediately after the camp, one of her legs went numb.
While her vision recovered, she copes with the lingering effects. She cannot drive a car and can’t be away from home unaccompanied for long periods. School has been challenging because of the symptoms.
“It’s very random,” Kiara said. “It fluctuates, but there’s always something going on.”
Because people with Bartonella mostly show no outward signs of their affliction, the disease is known as one of a number of mostly invisible chronic illnesses that have come to be called “spoonies,” Kiara said.
“It comes from something called the ‘spoon theory,’ which was a way to describe and represent the limited energy that people with chronic illness have,” she said. “The community just kind of adopted the name ‘spoonies.’”
Kiara said she and Kids 4 A Cure will continue the fundraising effort with the goal of handing at least $3,000 over to St. Judes by the end of the year. She hopes to keep doing fundraising concerts annually along with other charitable activities.
“It took six months for me to get a diagnosis,” she said. “I know if I didn’t get a diagnosis that early on, I would have been worse and possibly wheel-chair bound. So, I know how important it is to get medical access to people.”
Her experience with Bartonella left her with another enduring effect.
“I really don’t like spiders,” she said.
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