I've started riding the Courage Classic back in 2007. At that time this ride represented a very well organize event and opportunity to ride the roads of the awesome mountains of Colorado. Through the years I've been listening the stories from the riders, and the meaning of this ride represents to them. Now this ride is more than a ride, the Courage Classic is a way to give hope to the children and their families that are facing the most difficult times in their lives.
This ride is for them, to the children and their families, the doctors and nurses, to all the riders and volunteers that makes this ride an amazing experience. And with your support you are giving to all the children the opportunity to have a chance on a better life. This year I'm riding with the Wheels of Justice, in memory of Will Maniatis and I want to share his story:.
Will was diagnosed with Acute Myeloid Leukemia (AML) on December 18, 2018. He had just turned 14 and, prior to diagnosis, was a very healthy, vital and strong kid and no history of cancer in our family.
The sub-type of Will’s leukemia put him immediately into the “high-risk” category (he also had central nervous system involvement which caused damage to his pituitary and an additional diagnosis of diabetes insipidus). The first two highly-aggressive rounds of chemotherapy had very little impact on his disease burden so we began the process of searching for clinical trials.
We learned Will would need a bone marrow transplant (BMT) to save his life and, fortunately, both big brothers were perfect matches. In the meantime, Will participated in a clinical trial that did have a considerable impact on the percentage of leukemic blasts in his bone marrow so he elected to repeat the same treatment regimen in hopes of achieving enough “remission” to move forward with a transplant.
It was a “Hail Mary” but, miraculously, the results of his bone marrow biopsy revealed he could proceed! The timeline for transplant was very aggressive but we knew it was his only hope for further treatment and big brother Stathi was waiting in the wings ready to donate his healthy marrow the very moment it was needed. We very much felt if Will could get through BMT then perhaps he could defy the odds and come through his diagnosis victorious.
Will was an absolute warrior throughout and walked out of Children’s Hospital Colorado on May 28, 2019 after being inpatient for almost 6 months. He began the arduous task of recovery from transplant and we started to see the light at the end of the tunnel.
Unfortunately, just before Will was to hit his +100 day milestone of transplant we learned he had relapsed with active disease.
Will chose to hit the pause button before making any big decisions for next steps and was able to start his freshman year of high school and set his sights on some milestones of his own. He wanted time to be a “normal” kid, go to school and football games and attend homecoming. He was able to do that and more and we all thrived as we followed our son’s lead by living in the moment; he gifted us the space to rest, recover and exhale before starting the fight once again.
Will started salvage chemo for relapsed AML in hopes of bridging the gap until he became eligible for emerging CAR-T trials for AML that were not yet enrolling pediatric patients. He responded beautifully to the first round however in the midst of the second his AML made a fierce comeback. In cases like Will’s turning to additional and aggressive chemo options pose much risk for life-threatening complications with little effect on disease burden and he literally ran out of viable options.
Will chose to live out the rest of his days at home, the place he loved best surrounded by those he treasured most, his family and friends. Two months later and exactly 14 months after he was diagnosed Will laid down his sword and ended his fight against AML. Forever 15 and Forever loved.
stories like this encourage me to do something. Help me to reach my goal for the Courage Classic 2024,!.
Marisol.
