Why I ride
I started this journey with Courage Classic when our daughter Ashley had emergency Open Heart Surgery her freshman year of high school to repair her mitral valve due to complications from Bacteria Endocarditus. I am happy to report due to the blessings of having Children's Hospital of Denver so close to us, she is doing great, living her best life, and not limited in any of her activities. Ashley is an avid rock climber, backpacker, scuba diver and is currently getting her PhD at Stony Brook University. It is due to the grace of God, and the wonderful doctors and staff in the Cardiac Unit that Ashley is doing so well. It is with Ashley's request that we ride for other heart warriors from The Cardiac Unit at this point. I am happy to say that this year I have the opportunity to ride for the amazing little Berkley.
Here is her story.
Berkley is a feisty, stubborn, silly toddler with Hypoplastic Left Heart Syndrome and Wolff-Parkinson-White Syndrome. At just five days old, Berkley underwent her first open heart surgery. She came through the surgery with flying colors, but was plagued by arrhythmias (an irregular, fast heart beat) during her recovery that gave her care team a run for their money. After being diagnosed with vocal cord paralysis (a common side effect of her heart surgery) and having surgery to place a gastrostomy tube to allow her to safely feed, she went home. During the four month time period between surgeries, Berkley bonded with her older brother and parents, grew chubbier, and worked on her feeding skills. At four months old, Berkley returned for her second open heart surgery. Again, she came through the surgery with flying colors, but quickly ran into several roadblocks during recovery including low oxygen levels that caused seizures and a stroke, was diagnosed with a clotting disorder after having multiple clots, two interventional heart catheterization procedures, survived on ECMO (life support) for eight days, and ended up having another (unexpected and unplanned) open heart surgery that ultimately saved her life. Since the day she was born, Berkley has been described as feisty and stubborn. Even as a tiny baby, she made it known what she did and didn't like, often with strong kicks. She does not follow the path of least resistance, but rather forges her own path through fire. In the year since she was discharged from the hospital, Berkley has put in serious work to get where she is today. She attends weekly feeding, occupational, and physical therapies to help her catch up on her milestones. She receives daily medications including intravenous injections to keep her healthy and stable. Despite all the odds stacked against her, Berkley is the most happy, silly, outgoing toddler. She loves playing with her older brother and laughing at his silly antics. Some of her favorite activities include swinging, anything water related like swimming and bath time, and singing in the car. Berkley has the most piercing blue eyes and bright pink glasses that draw everyone around her in, then they stick around for her smile and sweet little voice that chants "hi" over and over. Berkley has taught us to love fiercely, live in the moment, not take the small things in life for granted, and to believe in miracles. Berkley has a long, tough road ahead of her, including another heart surgery, but we are confident that her stubbornness and will to prove others wrong will carry her through.
Berkley and Ashley are not the only warriors out there, and certainly will not be the last children to face a life-threatening illness, and our families will not be the last to navigate a frightening diagnosis. The Courage Classic is both a personal challenge and an opportunity to support positive outcomes for kids and families who need Children's Colorado.
Thank you so much for helping out with what you can.