An Open Letter to KATA Ride followers and donors from the mother of a child with Fanconi anemia:
Dear Followers,
Your support for the KATA Coast to Coast Ride for Fanconi Anemia is humbling. I know many of you including the riders themselves, do not have a child or loved one with Fanconi anemia, and yet you open your hearts and your wallets to support research to keep my child alive. You spend your valuable time reading each story and recap, inviting your friends to this page, liking and sharing each post, and writing encouraging comments to the riders and FA Fighters, and for that, I am eternally grateful. Even if your time, donations, and efforts give me or my fellow FA parents just one more day with our child, it means the world to us because we FA parents know the reality of this disease is that one day, we will likely be forced to bury our children - an exceptionally horrific torture no parent should have to endure. A torture one family must go through right now.
Thursday morning, while surrounded by his family and those who loved him, FA Fighter, Carson Vitrano, Mighty Carson, earned his angel wings, breathed his last breath, and was finally released from the grip Fanconi anemia had on him his entire life. Carson won - finally FA cannot hurt him anymore - but the only way he could win this battle is by leaving the ones he loved the most. Please keep the Vitrano family, Joseph and Natalie, and Carson's brother and sister Chandler and Cameron, in your prayers as they mourn this enormous loss. They created many wonderful memories with Carson, and we can only hope they find comfort in those as they lay their son and brother to rest.
Dying should NOT be the only way to win a battle against Fanconi anemia, but without a cure, it is. Without better treatment, each man, woman, and child with Fanconi anemia will have this disease, worry about what pain and terror it will cause next, and endure its wrath until their last breath.
Attached is a picture of my daughter, Bella, with Carson. It was taken just last year, only weeks before Carson went to transplant. Carson's fate could have befallen either one of these innocent children or even both if it chose, because Fanconi anemia doesn't play fair. It randomly selects which child will go into bone marrow failure and plays Russian roulette with each transplant outcome. Sometimes, 1 in 10 times is what the statistics tell us, the chamber is loaded, a bullet of transplant complications is fired, and children suffer and die. Children like Carson. It is so wrong in so many ways. I cannot help but wonder when it will be Bella's turn to play the game, and I am helpless to do anything but pray to God that she doesn't lose.
My hands are tied because Bella's fate is written on her DNA and we can't change that. As any parent, spouse, sibling, or loved one of someone with Fanconi anemia would do, I would give my own life to fix what is broken with Bella, but I simply cannot. The world doesn't work that way. And, after 13 years of medical bills, missed work, hotel stays, mileage, and other expenses, we alone cannot fund this battle to save our loved ones from the wrath of this disease.
We rely on the kindness and generosity of others, of strangers, of you, to help us save our children. We want to do better, to make the outcome better for those that continue to fight this war, because they deserve it. They deserve to one day live a life where they have no label attached with an early expiration date.
And so, I ask for your money each and every day, sometimes twice a day. I try to creatively segue from the story of a FA fighter into a plea for your donation without directly asking you for the millionth time. I try to convey the urgency and necessity of research to improve treatment and outcomes without pushing you to the point where you find me annoying and click 'unfollow.: I like, share, and comment on my own posts in the hopes it will become more visible on Facebook (algorithms, sheesh!) and that just one single additional person will see it and make a donation, no matter how big or small, to help my child and the hundreds of others with Fanconi anemia. Admittedly, I use my words to try to compel you to donate because I have no other tools. I do this because I don't know who is next. Who will be the next Carson? Will it be my precious Bella? Will it be another one of her friends? Will it be a family who has already been through hell and back now made to suffer again?
Six more days. There are just six more days until this fundraising effort is over and normal life, including your Facebook newsfeed, will resume as it was before. For many of us FA parents, that means back to the quarterly blood draws, annual aspirations, countless appointments and continued daily efforts to keep our children healthy and alive. But for Carson's family, normal no longer exists and I'm certain they would give anything to have it back. The loss of Carson and the knowledge that we don't know who is next is not only terrifying, but the entire FA community, including you our supporters, has been shaken to our core.
Please bear with me for the next 6 days as I try harder than ever to harass, compel, beg, and plead for your continued support and encourage you to spread the word as far as your keyboard can reach. As a tradeoff for your time, I hope to also introduce you to a few more incredible FA fighters, tell you their story, and give you the opportunity to be inspired by their battle as I have been. Knowing them has enriched my life, and I truly hope it does the same for you. I thank you again for time, efforts, donations, and support, and I ask that you please help us finish this endeavor strong - for Carson, for every FA fighter we have ridden for, and for every FA fighter continuing this battle each day.
With Sincerest Gratitude and Appreciation,
Stephanie Lyn Griggs, mother of Bella - FA Fighter