In honor of Nolan’s transplant anniversary, and to help raise awareness about being a donor, I will be participating in a Spartan race June 1st and 2nd, the end date of this fundraiser. Every time I train I think of Nolan and the battle he fought. I think of all of those still fighting their battles and patiently waiting for their “perfect” match. On June 1st and 2nd I will be running with so much gratitude and determination! Gratitude for this second chance at life Nolan has received from his donor and determination to continue to bring awareness about HLH and becoming a bone marrow donor.
At barely 4 months old, after several weeks of hospital stays, high fevers, many tests, and multiple blood and platelet transfusions, our son received the diagnosis of familial hemophagocytic lymphohistiocystosis (HLH). His only cure was a bone marrow transplant. We were scared and did not know what it all entailed. We quickly learned that in order for our son, Nolan, to receive a transplant he would need to have a “perfect” or “good” match on the registry. At times, there is no match on the registry and you are left waiting until someone registers to donate that matches your genetic make up. HLH is extremely aggressive and we were told that a transplant needs to happen as soon as possible. Fortunately, Nolan had a match. It was a cord blood match. A family, in Italy, donated their daughter’s cord blood after she was born. Their decision saved Nolan’s life!
It saddens me when I hear of someone, especially a child, who passed away as they were waiting for their “perfect” match to sign up and be on the registry. Nolan’s one year post transplant anniversary is approaching and we wanted to do something to pay it forward. Your financial gift can add new potential donors to the registry, help with uninsured transplant costs, as well as fund research to improve transplant outcomes!
Please join me in reaching our fundraising goal. Your donation is tax-deductible and gives hope to those desperately waiting for their second chance at life. We, along with our family, will be matching any donation given up to $1,000. Now let’s reach this goal and help be the cure for those who need it! Thank you!