Samuel's Marble Road

An organization called Marble Road (www.marbleroad.org) sponsored the Rare Storybook Project contest, inviting those affected with rare disease to submit a story. I submitted the story, "Sam and the Lost Wobby," featuring Samuel and Horton the Great Dane, written by Samuel, according to his godmother, and real author, Brenda Nightingale, and illustrated by mEG Arrowood. As part of the contest, participants were asked to make a video, preferably, I think, to accompany the story. However, in this case, the two main characters of the story are deceased, making it difficult, to say the least, to make a video to go along with the storybook.

Marble Road's objective is to bring attention, awareness, and find a way to participate in the global observance of World Rare Disease Day, the last day of February. (This year it occurs on a rare day, Feb. 29). The attached video is an excerpt from one of our favorites of Samuel. It was taken in 2007. I drafted a verse/poem about the effects of rare disease, which serves as the narration. In the background Samuel's laughter reminds us of both the preciousness and the precariousness of life. Not unlike living with grief when memories make one both happy and sad in the same moment.

Watching the video, it's hard to imagine that Samuel's life ended a few months later. Although he's hooked up to an I.V., which isn't really noticeable in the video, he is obviously feeling well.  That's my brother Mark in the video, while Jim (Samuel's Dad) is filming.

The video ended up doing something for me personally I didn't realize until I watched on YouTube for the first time. I realized how much of my perspective is expressed; forever wondering where the hell this disease came from. How did it reach Samuel? How is it a disease like Langerhans Cell Histiocytosis (LCH) can go away on its own for some and cause the death of others? And so many other questions.

At the same time the video relates Samuel's story in a very brief manner, and in fairly chronological order. Diagnosis, trials & treatments, multiple tests, a "quiescent" diagnosis, the stoppage of chemo because his body was literally corroding, the splenectomy, the halting of the bone marrow transplant, and his death.

The video was filmed at UNC Children's Hospital in room 5C24. It wasn't a very long stay; just a few days. That end of the hall was usually for cardiac patients and those children with cystic fibrosis. However, there were no rooms on the hem/onc end of the floor, where Samuel had already spent much of his life.

Help spread the word. Help spread awareness about rare disease. In doing so, it will contribute to more funding, whether public or private, for research into the causes and cures.