18 Sep Doers, Talaya Frazier: MicroMarathon, 9/25
CC4C’s 2016 MicroMarathon 4 Inspiration is a family friendly hike for all ages to enjoy, designed to inspire and help little children seeking diagnosis and healing. The event in Telluride is a hike to Hope Lake, in keeping with the mission of giving hope to the young and challenged and their families. The walk/run takes place Sunday, September 25. Check in at Trout Lake is 8:30 a.m.; Hike for Inspiration begins at 9:15 a.m. Register today here.
A parallel event is happening in Texas. The 5th annual MicroMarathon 4 Inspiration takes place at the Hill Country Galleria (in front of Whole Foods), 12700 Hill Country Blvd. Bee Cave, Texas. Registration is 8:30 a.m. Walk/run begins 9:30 a.m. Closing and awards, 10:30 a.m. Tickets,$35 adult; $15 for children.
Event and nonprofit motto: “Inspire… Be inspired!”
What inspires people to go the extra mile, turn lemons into lemonade for those who are, in effect, thirsty?
One answer lies in Talaya Frazier’s story about the long and difficult journey she took with her daughter. The good news: it has a happy ending.
It all began when another young girl named Skylar, then age seven, had just come out of an 11-day coma. Her doctors did not know if the child, a family friend, would live let alone walk again, given the horrible infection in her leg and hip.
1st annual run, Talaya & Cheyanna.
At the time of Skylar’s challenge, Talaya was training for the Boston Marathon. When she visited the young girl in the hospital, she made a simple promise: if Skylar would train to walk again, Talaya would run the Boston Marathon in her honor and give Skylar the medal.
The simple promise morphed into the Fraziers’ nonprofit, Cheyanna’s Champions 4 Children, named after Talaya’s own daughter. The vision of CC4c clearly targets “Any child, anywhere, without answers to their illness…”
Note the message on the pup’s wristband: “Never Give Up.” Talaya lived that mantra when Cheyanna was ill. Now she and her crew live those words everyday through their work at CC4C.
CC4C offers a community to turn to for resources and support to heal.
CC4C refines the vision with its mission: “Bringing hope, help, and inspiration to children suffering from rare or undiagnosed medical conditions and using its resources to reduce diagnosis time.”
To execute that vision, CC4C matches each sponsored child with a Champion Teammate and a high school team.
Teammates use their platform or celebrity status to provide the child with unforgettable, unique experiences. Children are also made honorary members of the high school teams. These interactions provide the afflicted child with inspiring events to look forward to and the ability to attend and participate in team gatherings.
Children served by CC4C, with Talaya.
Interactive experiences help the young people take their minds off the countless medical visits they have to endure. The children feel empowered by visions of their recovery, for sure, a variation of the theme of a finish line; teammates win too: they are provided a reason beyond themselves to compete.
What’s more, CC4C forms a support network around the families of these children with rare or undiagnosed conditions. The nonprofit hosts inspirational events and does fundraising to help cover medical expenses not covered by insurance.
CC4C’s vision and execution is colorfully, movingly illustrated in this video:
The beautiful young girl who became CC4C’s muse, Cheyanna’s story:
Skylar & Cheyanna
Talaya’s daughter Cheyanna was ultimately diagnosed with an extremely rare condition, fructose/sucrose intolerance, initially a mystery to all the doctors the family saw for all too many years.
After receiving her vaccinations at age six months, Cheyanna began showing signs of “Failure to Thrive.”
By age one, Cheyanna was turned over to Dell Children’s Center in Austin, Texas.
At the time, Cheyanna was consuming near 3000 calories a day, but did not grow a single millimeter, nor did she gain a pound throughout that year. She also began losing her hair, could not speak, and was listless. Cheyanna awoke every morning at 5 a.m. with a shrilling scream for food, which continued throughout the day until she fell asleep. She would eat more food than a grown man and consume it all so quickly she would choke. Cheyanna would eat a lemon with the peel on, anything and everything, because she was effectively starving.
The Fraziers became isolated, unable to go to restaurants or anyplace where there was food in sight, because their child would simply not stop eating.
Talaya’s educational background in nutritional science became a gift, broadening her knowledge as to which medical and nutritional avenues to pursue, places where answers to Cheyanna’s undiagnosed condition might be found.
“We began to branch outside traditional western medicine, seeking any and all alternatives while my child was continuously tested and put on every diet possible. I never stopped my pursuit to find a cure. Desperate, I traveled across the states, seeking anyone with knowledge who could help save my baby. I spent hours on my knees in prayer. The teary eyes of my child looking up at me daily, wondering why I was holding her down for blood draws, Barium swallows, or other uncomfortable procedures, made my heart heavy.”
An exploratory surgery during which Cheyanna endured a mild seizure further fueled Talaya’s drive to find a cure.
Finally, through simple muscle testing, Cheyanna received her diagnosis, confirmed through further testing at Dell Children’s Hospital.
Fructose intolerance meant Cheyanna could not consume food containing sucrose or even fructose. Doing so would cause her to mal-absorb other nutrients. She was put on a limited diet of veggies, because vegetables contain sucrose; and protein with no sauces, because most sauces contain simple sugars. The highly restricted diet meant continued social isolation for the Fraziers:
“Visits to the bank (lollipops), pictures with Santa (candy canes), children’s church or pre-school (cheerios/ fruit for snacks) all involved food Cheyanna could not have,” continued Talaya. “But she was just too young to understand why and became very upset. Determined to not allow my daughter to feel alone in the battle, I would eat the same things she ate, sitting right beside her. At the park or social gatherings, I sat with Cheyanna so she would not be alone eating sardines (high protein, healthy fat, and calcium content) and bell peppers and drinking unsweetened almond milk, while all the other children and their mothers were enjoying sandwiches, fruit, and Capri-Suns.”
After years of alternative therapies, specialized diets, and intense nutritional regimens, plus countless other interventions to improve her speech and ensure mental wellness, Cheyanna is now healthy and completely healed from a condition Talaya was told her child would have to endure for life.
“Looking back, I can now piece the events of my life together and look at the bigger picture God had in mind: it was for me to help countless families who had lost hope. I know why I was passionate about pursuing a degree in biomed and nutritional science, even though my career would entail entrepreneurship. God needed me to have medical knowledge, as well as business experience, in order to care for Cheyanna and later bring forth the mission of empowering other families who suffer undiagnosed or rare conditions in their children as well.”
To become further inspired to join the CC4C team either in Telluride or Texas, watch this video from the 2015 event:
https://vimeo.com/145596010
Twitter is @cc4corg.
Instagram is cc4corg.
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