While I am waiting for updates from Free Range Chikn, who is deep in the wilderness of the PCT, “Doin’ it cause (he) can, for those who can’t,” and adventuring in honor of Cadence & Asher, I thought I’d take a moment to tie some things together.
A couple of months ago, Lori (Cadence & Asher’s mom, my sister) asked me to help blog on the ourlittleironemen website. She also threw some ideas my way involving my conceptualization of a story about the boys, portraying Cadence and Asher as a type of superheroes of sorts. The goals, of both the blogs and the story, would ultimately be to help Cadence and Asher by serving as a window into the lives of her family and their experience with Hunter Syndrome, as well as to act as a vehicle for raising awareness and support to others affected by this genetic disorder. The idea took time for me to develop and morphed from, a children’s storybook into a song which will now be performed live for the first time, in public, by Day 9 and me at the Iron Sharpens Iron fundraising event on June 20, 2015 in Tradition, Port St. Lucie, FL. The name of the song is “The Adventures of Mr. Giggle & Chuckle Tummy” and I’m hoping that, with some divine intervention and maybe a little help from someone more technologically talented than I, this can become the theme song for the website/blog.
The concept of the song is based on who I see Cadence and Asher to be, the role they play in our lives as a family and how much we love them. I see their amazing personalities, interests and potential and ache for them, wanting so desperately for them to know what they mean to this family and for them to be able to grow into who they want to become.
Being that we are a family of musicians and artists and that the boys’ mom, my sister Lori Adams, is one of the best I’ve ever seen, it would only follow suit that her boys would be rock-star superheroes. While attempting to come up with a theme for the story (now song), I looked through many photos of the boys. I soon realized the majority of photos I had were of them playing instruments. These lil guys also LOVE to dance and they each have their own style! It was settled. Rock-star superheroes it was! And we all know that each rock star has his, very own, rock-star name. After careful consideration, I went with the nicknames I call them sometimes based on their funny little personalities, Mr. Giggle (Cadence) loves to listen to and play music and is a complete tease and joker! “With his downright infectious beat he brings all the party poopers to their feet…” (lyrics). Chuckle Tummy (Asher) not only totes smiles as wide as the grand canyon but he magically puts them on everyone else’s faces too! “…Makes everyone smile from Canada to Mexico…” (lyrics). He also happens to be Mr. Giggle’s inseparable sidekick. The two make magical, musical mayhem infecting everyone they meet with their cool and adventurous vibe. In another land, I see them taking the world by storm with their musical adventure. In this world, it is my hope that we help them to do that even if they physically can’t, by spreading awareness for them, not only about their limiting disease, but about whom they are and how they make legendary impressions on our lives.
During the process of bringing this idea into focus, an outpouring of ideas to help Cadence and Asher were also brought to the table. Two of the ideas included the Iron Sharpens Iron Event coordinated by our brother, Will and V.E.M.A., (the Treasure Coast motorcycle club he belongs to) and the Pacific Crest Trail (PCT) Walk for Hunter Syndrome Awareness, led by Shane Theriault (aka Free Range Chikn) in honor of the boys, as well as its accompanying T-Shirt Campaign (coordinated by me).
The timing of all of this is such that we are kind of grouping it all together, using the local live event (Iron Sharpens Iron) to launch the coast to coast event (PCT Walk & T-Shirt Campaign) as well as introduce the song. I thought it was pretty cool that both hikers and bikers also have nicknames, so Mr. Giggle & Chuckle Tummy will fit right in and have their very own, built in honorary trail and biker names just in time for this event! They will also be able to, with everyone’s support, adventure vicariously through hikers across the country and other “warm hearted homies who care” (lyrics) and who are wearing t-shirts wielding their likeness and cause. It is our hope that the upcoming Iron Sharpens Iron event will not only raise funds locally for the boys but will also catapult awareness through the implementation of the concept mentioned in this blog, utilizing the PCT Walk and T-shirt Campaign, which can be done from anywhere in the world. Please see PCT Walk & T-Shirt Campaign to learn how you can help and to purchase a t-shirt for Mr. Giggle & Chuckle Tummy!
I also later came to find out that the thought and desire to help these guys stake their claim in this world, as they “fight the good fight that’s already been won” (lyrics) was, serendipitous, partly due to the theme of the recent Project Alive campaign that my sister (and our family) is also so passionately supportive of. Although the two are not directly related, both point to the terrible realization that without awareness, better treatments and ultimately a cure, boys with Hunter Syndrome may not grow up to be who we know and so desperately want them to become. While Project Alive is intended to raise awareness and funds for better treatment for Hunter Syndrome, the Iron Sharpens Iron and PCT Walk & T-Shirt campaign in particular are geared toward giving Cadence and Asher, specifically, the chance to be recognized and honored for who they already are while simultaneously spreading awareness about MPS2 and raising money specifically for their care.
And each step Free Range Chikn takes on his trek on the Pacific Crest Trail (PCT) that leads from “Canada to Mexico” (lyrics) he is aiding in the Adventures of Mr. Giggle and Chuckle Tummy, by wearing their t-shirt, spreading their word and “Doin’ it cause (he) can, for those who can’t.” Please join us. Let’s be Mr. Giggle and Chuckle Tummy’s “friends who help them rock the nation!” (lyrics)