At the risk of stating the obvious, there’s no worse tragedy a family can endure than the loss of a child. Correspondingly, there’s no greater act of humanity than for the parent of a child who passed away to somehow move beyond her unimaginable heartbreak and give fully of herself to help others facing the nightmare of serious childhood illnesses. On October 25th, I had the privilege of witnessing such greatness firsthand.
It was an unseasonably warm as Sammy Goldman, age 4, stood in his yard bouncing, his joyous energy obscuring the fact he’d recently finished yet another round of chemotherapy for Neuro Fibramatosis, a condition that had threatened both his life and eyesight. By his side as they’d been throughout the entire hellish ordeal, were his parents, Sam and Shellie, as well as his big sister Chloe. They were all awaiting the arrival of Sammy’s favorite thing in the world—a trash truck—something my non-profit organization, Diamond Is the Sky, as well as another, Kisses 4 Kayla, had arranged to have venture to his house.
I had first learned of Sammy and his condition during a Bikram Yoga fundraiser in his honor this past summer. His father was teaching the class and spoke of how the Dana Farber Foundation had arranged for a trash truck to visit his young son to boost his spirits. Sammy, thank goodness, was doing much better and appeared to be out of immediate danger but he’d still endured something no kid should ever have to and deserved another trash truck visit, something that would easy enough for Diamond to arrange for him, especially since we’d recently become aware of a trash disposal company called Up-Town Trucking and, more specifically, its benevolent owner, Noel Levesque.
Noel had won a contest Diamond put on for Standout Community Member for the story of how his gift of a pink trash barrel for a girl with autism prevented the girl from wandering further onto her busy road in pursuit of the pink barrel across the street. Technically, Noel’s reward was 2 Red Sox box seats courtesy of Diamond but, in reality, he hardly needed something tangible to feel rewarded, as further evidenced when he passed the tickets along to the dying mother of a young man with Asperger’s so she could fulfill her dying wish of taking her son to a Red Sox game. Suffice it to say, Noel being involved with this project felt like a safe bet.
We needed more, though, as while Diamond’s mission is purposefully broad, it’s also generally on the lighter side of providing fun resources for people with special needs to better integrate them into their communities, not cheering up a kid getting chemo. Thus, we needed expertise to make the day truly memorable for Sammy. This is where Kisses 4 Kayla, specifically their President and co-founder, Kerry Millette, came in.
I thought the entire project would be right up Kerry’s alley and I was right, as she considered things I hadn’t, such as gifts for both Sammy and his big sister instead of having it all about the boy. It was the exact type of thing Kisses 4 Kayla existed for and I was grateful to have Kerry onboard. Still, I had no idea of just how grateful I would soon be until the afternoon of the truck visit on October 25th.
When the truck turned the corner, Sammy let out screams of joy and ran toward it, his family right behind him. When his father stated the boy loved trash trucks, I had no idea as to just how true that was until seeing and hearing it firsthand, as I’m not sure anyone has ever been happier about anything than Sammy was to see that truck. Not surprisingly, Noel was the perfect host and Sammy spent the next 90 minutes riding in the truck, beeping the horn, and otherwise experiencing everything about it short of driving. He and his sister also opened their gifts and played with my daughters as the grownups all talked.
Eventually, discussion turned to our respective organizations. My description of Diamond was brief, as we were obviously just honored observers to the greatness of others. This became increasingly evident as Kerry spoke of Kisses 4 Kayla and, more to the point, the unimaginable horror she, her husband Craig, son Ty, and daughter Ava, also Kayla’s twin sister, had endured.
She explained how Kayla, her once-bubbly little girl, had gotten a fever and grown lethargic on her last day of pre-school in June of 2011. Chillingly, the problem turned out to be Hemophagocytic Lymphohistiocytosis (HLH), a potentially deadly disorder that bore similarities to cancer. At the age of 4—same as Sammy—she began chemotherapy, something that continued for 6 months. Slowly but surely, the chemo seemed to work and the vibrant little girl returned, playing soccer and enjoying her friends. For the first time in ages, she got to be a kid again, a joyous time still reflected in her mother’s tone even a few years later.
In January of 2012, Kayla returned to the hospital for more chemo and a bone marrow transplant from her selfless twin sister. Complications ensued but Kayla, ever the fighter, returned in April for even more treatment and another transplant from Ava, also a fighter. The transplant worked but the pounding from the toxins on her immune system was too much for the 5-year-old to bear. On June 12, 2012, Heaven became a better place when it gained Kayla. And in fall of that same year, Kerry and her family set out to have the same effect on this world by forming Kisses 4 Kayla, a non-profit organization serving people and families dealing with serious childhood illnesses.
It was difficult to maintain my composure as I listened to Kerry. I can’t say for certain what I’d do if I lost one of my daughters but it feels unlikely I’d survive, let alone persevere while also helping others. It struck me Kerry was operating on an entirely different level of humanity than myself or pretty much anyone else I’d ever met. When the visit finally wrapped up–the spirits of Sammy and his family boosted thanks to her and Noel–I wasn’t only honored to be a tiny part of the day but a different person altogether. Kerry’s courage and altruism had changed me forever.
To learn more about Kisses 4 Kayla, please visit http://www.kaylamillettememorialfoundation.com/ as well as their Facebook page https://www.facebook.com/pages/Kisses-4-Kayla/299001120197605?fref=ts.