Give the shirt off her back? Easy. The last bite of food? No doubt. Run a marathon in honor of her? Well…theoretically.

What about creating a nonprofit organization in her daughter’s name? If you’re Talaya Frazier, you would answer yes to all of the above.

In 2006, Talaya had a young daughter named Cheyanna at home, and her girl was struggling. At nine months of age, she was diagnosed with failure to thrive, meaning she wasn’t growing or gaining weight at the same rate as other children her age. Even more bizarre, Cheyanna ate as many calories as a full-grown adult and had zero satiety with unending hunger, screaming for food 24/7. After countless doctor visits, exploratory surgery, and extensive testing, her medical team remained baffled. She was listless, losing her hair, and unable to speak.

“Not a single doctor or specialist could diagnose her disorder,” Talaya explained. “My family and I felt isolated, desperate and afraid. At the time, there was no community support for us. Not a single doctor, family member, or friend could understand our situation. Eventually, we learned she had a very rare condition that had no treatment or cure. However, we continued to seek therapies and treatments to help support her.”

Two years had passed before the family had a name for what she was experiencing. That ultra-rare condition was identified as fructose and sucrose malabsorption, meaning Cheyanna’s body failed to digest sugars into glucose. They were told she would have this rare condition for life.

Cheyanna’s nutritional deficiencies led to several physical conditions, which also affected her emotional behaviors. 

“She had developed the mentality of a child who had been starved,” said Talaya. “She would hide food, search for food in trash cans, and never stop eating even when full.”

Thankfully, after years of prayer and mental, physical, and nutritional therapies, Cheyanna was eventually healed and able to start school at age six. Her miraculous healing, despite overwhelming odds, inspired her family to start a nonprofit organization in her name called Cheyanna’s Champions 4 Children (CC4C).

The idea came from their personal experience, but it really gained legs (pun intended) thanks to Talaya’s dedication to running and fundraising opportunities that came through her talent in the sport. 

She started running to help cope with the stress of all her daughter was experiencing and ran her first marathon in 2006 in honor of Cheyanna. She hoped Cheyanna would someday cross her own finish line of healing. Over the next ten years, Talaya completed 34 marathons, including ten consecutive Boston Marathons, and was a member of Team USA for the Half-Iron Man. She was, clearly, a force to be reckoned with.

As her love for running grew, Talaya began organizing races to benefit children she knew and loved – starting with Cheyanna and then another special girl named Skylar. 

One day, Skylar fell ill with a strep infection that settled in her hip and resulted in septic shock and the necrosis of the soft tissue of the hip. Skylar fell into an 11-day coma. Then her kidneys failed, she stopped breathing, and 13 doctors worked tirelessly to save her life.

They were ultimately successful, though the hip infection required numerous surgeries and her use of a wheelchair for mobility. (Like Cheyanna, Skylar beat the odds, learning to walk, run, and live a happy life despite the incredible challenges that had been thrown her way.)

Through the stories of these two brave girls, CC4C began to find its footing and grow as a resource for families in similar circumstances. They hoped that more children with undiagnosed or rare conditions in Texas (and beyond) would have an opportunity to heal and find a sense of community.

“Our journey taught us that there are countless children like Cheyanna who needed a champion to fight for them,” Talaya shared. “At that time, CC4C was the only nonprofit of its kind in the state.” 

They knew these families needed more support. 

Today, Cheyanna is a thriving, healthy senior in high school, and her namesake nonprofit is doing more than ever.

CC4C provides emotional and financial support for rare medical families in Texas, including mental health and wellness, financial assistance (up to $6,000), special events for moms, dads, siblings, and families, and the Dream Team.

Each child is placed on a high school “Dream Team.” The team dedicates their season to bringing joy and inspiration to the child by making them an honorary teammate and providing unique opportunities for the child.

They’re also accepting applications now through March 1, 2024, for their Spotlight Children program, which comes with access to all of the services listed above. The goal is simple but impactful: To enhance the quality of life for children and families in Texas with rare and undiagnosed conditions.

That’s why it only made sense for our two organizations to partner to create a bigger impact here in Central Texas and beyond. Since 2012, it’s been our mission to provide life-changing grants for Veterans, first responders, military families, and individuals with a rare medical diagnosis – especially medically related needs that might not be covered by insurance or other resources.

(See a familiar face? Chive Charities and our donors supported Simon and his family with over $37,000, including $15,000 to cover critical items and therapies for Simon and an additional $22,000 that was dedicated to the Cure Sanfilippo Foundation with the hope that with new research and trials, Simon and other kids like him will have a chance at successfully fighting this devastating disease.)

To help impact more rare medical families, Chive Charities provided a grant of $10,000 to CC4C to fund the Financial Assistance Program directly. It will have huge benefits for families like the McDougals:

“We are the McDougal family! To anyone who meets us on the street, we look happy {we are} and healthy {we aren’t}! Over the past few years, the health of our two daughters has been in a steady decline, which has forced us down a path of countless doctors, testing, and an unparalleled concern for their well-being…

“The generous donations you made available to our family have meant so much, especially during this time of the year!  For the first time in a very long time, we have been able to take a much-needed collective breath.

“…From the bottoms of our hearts, THANK YOU for this kind blessing!”

It all goes back to parents advocating for their children and families supporting families. At Chive Charities, we hear it time and time again. Many of these children face circumstances beyond what we could imagine, yet they face each day with strength and resilience – just like those who love them the most.

To every person who donated to help us show them that they aren’t forgotten - that they aren’t alone - we are so grateful. To CC4C, who continually works to find and assist more rare medical families, we’re with you. And to those still waiting for their own support and hoping for a community to stand behind them, we’re coming for you. Be part of it with us, and DONATE HERE.