As Grace started kindergarten in August 2015, her symptoms became apparent. She had trouble walking, fell down frequently, had trouble staying awake, and it seemed like she was at home sick more than she was in school. In November 2015, Grace finally had her first appointment, and after a year of testing, was diagnosed with a rare genetic condition called Friedreich's Ataxia (FA). Her life went from soccer, school, and wrestling with her daddy to blood draws and hospitals.
Friedreich's Ataxia has taken Grace's ability to walk and caused a very serious complication with her heart called hypertrophic cardiomyopathy, a condition in which a portion of her heart has thickened, impeding its ability to pump blood effectively.
Grace never feared the monster and giving it a name didn't change that. She’s always been a strong-willed, independent, fearless force of nature, and the newfound risk of sudden cardiac arrest caused her to lose the joyful light in her eyes. Then one fateful day, Grace met Charles Webb from the adaptive surfing nonprofit Stoke for Life, and we saw the light come back into Grace's eyes. She surfed for the first time and she never looked back.
When Grace surfs, her smile is magical and her joy infectious as she flies through the water free from doctors, hospitals, and a disease determined to take her away too soon. In a world that has so many uncertainties for Grace, one thing we know we can do is provide her with as many magical life experiences as possible.
Chive Charities granted us with a much-needed wheelchair-accessible van, so transportation no longer holds us back from getting Grace out to surf and enjoy her community. As if that wasn’t enough, they asked Grace if there was anything else they could do, and it didn't take Grace long to reply. She knew she wanted her own adaptive surfboard, and to surf where the Master of surfing Duke Kahanamoku turned surfing into the popular sport it is today...Hawaii! More than anything, she dreams of watching the best surfers in the world at Duke Fest, and it is our sincere hope you’ll help us make Grace’s dream a reality.
Thank you to Chive Charities, Chive Nation, and everyone supporting our daughter's journey!
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