By Julie Costello
$650.00 in Support of The Benjamin Gilkey Fund for Innovative Pediatric Cancer Research
Unfair. Wrong. Unbelievably heartbreaking. All of these descriptors are true. But, there is a remarkable thing that happens when people connect and villagers unite.
Benjamin Gilkey was a bright, empathetic, independent, creative, sweet and spicy nine year old boy. On New Year’s Eve 2014, he was diagnosed with Pre-B Cell Acute Lymphoblastic Leukemia. Day 1 of treatment was January 2, 2015. He entered the long term maintenance phase of treatment on October 27, 2015, and expected to continue maintenance through spring of 2018. But on September 16, 2016, Benjamin relapsed. His leukemia had returned. While Benjamin awaited entry into a clinical trial by the NIH leukemia infiltrated his organs. Benjamin died on Saturday, February 11, 2017.
Affectionately known as Benji the Brave, this sweet soul was a school mate of my daughter. Just one month after we launched The Love Tea Company I learned that Benji's health was deteriorating rapidly. Against the back drop of his mother's heart warming and simultaneously heart wrenching journal, Rainbows in the Clouds, a community of love warriors held space for this family as they navigated the journey between life and death.
Like so many, I waited each day for the notification that Laura had posted to her blog. Holding out hope that we would hear the news that Benjamin was going to be OK. Those words never came, but what happened next was remarkable. People formed food chains, prayer circles, and fundraisers of every kind. Through the power of love, and a little help from technology, love warriors from all corners of the country (many that the Gilkey's did not know personally) came together to literally lift this family up. By sharing Benji's story with the world Laura allowed us all to bear witness to her journey, to Benji's journey, and in return we showed up, to lift her up.
Technology. Sometimes we give it such a bad wrap. But it was Laura's online journal that allowed me to stay abreast of their journey after we moved from Sarasota, Florida to Seattle, Washington. Without technology I would have missed experiencing the last bits of joy, along with the last hint of Benjamin's breath. I know that I speak for many when I say what a blessing it was to follow their journey. His story, her story, profoundly changed my life. I will never see a Rainbow and not think of Benjamin the Brave. I will never take for a granted a single day I have with my own daughter. I will not sit idly by and hope that the world somehow figures out how to cure childhood cancer or how to support families in the throws of grief, trauma or health crisis.
Fundraising through an exclusive tea blend was built into our business plan, it is a part of our purpose. But as a brand new business we were no where near ready to start this activity. It was February 4th, when I woke up and knew we needed to release Benji's Blend. With the help of a few friends and a whole lot of love, we immediately posted the tea. We were pleasantly surprised to wake up the next morning with 40 orders. Over the next 7 days we raised $650 through sales of Benji's Blend. So many people wanted to help and were able to help.
Knowing that Laura was working on a personal project with Johns Hopkins All Childrens Hospital we stopped selling Benji's Blend upon his passing so that the family could direct any efforts to memorialize Benji's memory in whatever way they saw fit. On February 14th Laura announced the formation of the Benjamin Gilkey Fund for Innovative Cancer Research http://tiny.cc/BenjaminGilkeyFund and we were honored to donate $650 toward this worthy cause.
You can continue to support the Gilkey Family by donating here. Be sure to put Benjamin Gilkey in the “In Honor of” or “In Memory of” category, so that the funds are directed appropriately. Alternatively you can mail a check to The Benjamin Gilkey Fund for Innovative Pediatric Cancer Research, Johns Hopkins All Children’s Foundation, PO Box 3142, St. Petersburg, FL 33731-9954.
Comments will be approved before showing up.