Wish Full: A Dance for Dominic, a Boy with ALS

“Who are we in the face of struggle? Of hardship? Not of our choosing? It is not feats of strength; not money nor fame, that make for a life well lived.

It’s the something within. Call it courage; call it grace. That makes us stand, and ensure, not one person fights alone.” – Christine Beggs

As the snow drifted down in a choreographed swirl outside my window, I couldn’t get the smiling face of an 11 year old boy named Dominic Cumo out of my mind. Home for the holidays in Pennslyvania visiting family, I had been contacted by a photographer, Steve Cheng, based in Los Angeles, seeking a pro bono videographer to create a fundraising video. The cause? To raise money for a medically-equipped, wheelchair-accessible van for Dominic, the youngest person ever diagnosed with ALS.

Initially knowing only about ALS that it was associated with a viral ice bucket challenge,  I immediately threw myself into researching the disease. I quickly discovered that ALS is a rapidly progressive neurodegenerative disease that causes loss of muscle control in the body. And, startlingly, that most ALS patients die from respiratory failure within 3-5 years after being diagnosed.

Photo Credit: MKCO Photography Photo Credit: MKCO Photography Photo Credit: Steve Cheng Photo Credit: Steve Cheng

Returning to that smiling picture of Dominic after what I had learned about ALS, I marveled at the fact that he had been diagnosed with ALS at birth and just celebrated his 11th birthday.

I thought, “If this young man can still smile in the face of such a battle, we must all be capable of so much more than we know.”

Dominic seemed a bright, courageous spirit I just had to meet. A story I instantly knew the world needed to hear; a story I needed to tell.

As pressed my temple to the glass pane of my window, mesmerized by the  snow continuing to dance towards the earth, all I could think was, “Stuck.”

Normally based out of the San Francisco Bay area, I was all the way on the opposite coast with my family. What would’ve normally been a cheap out-of-pocket flight from SFO to LAX to cover this pro bono story, instead, was now a daunting financial obstacle keeping me from helping Dominic get his new van.

Refusing to be discouraged, I quickly began to devise a way to create a dance-based fundraising video that wouldn’t require filming in-person with Dominic. The something I could do with what I had, where I was.

As luck would have it though, the Universe aligned on all fronts for me to travel to help Dominic in-person. Within days of beginning to work on a dance to an unreleased song by Chasing Dream (specially donated for this project), ordering a costume from Dancewear Solutions, and searching for local blackbox theatres to film in and pro bono videographers to collaborate with, I received a paid project for a Kickstarter video out of Los Angeles.

Before I knew it, I found myself pressing my temple to another windowpane. This time, on an airplane. Finances no longer an excuse, I had booked the next flight to Los Angeles to dive head-on into a week of filming the paid project, shooting the dance piece and with the Cumo family in their home.

From 40,000 feet above the earth, clouds whipping by, my suitcase filled with a grocery bag of catkins I’d picked in my hometown of West Chester, PA to use in my dance (hoping beyond hope that I wouldn’t get in trouble for transporting native plants!), I found myself with my face smooshed against the glass of my window seat on the plane, this time thinking only, “What the f^%k am I doing? Can I do this? Dance for Dominic and respectfully show the world an intimate view of life with ALS?”

Never before had I taken such a creative leap; protective of my dancing and my writing both. Dominic kept me going through it all. I hadn’t even met him yet and he was helping me stay true to my vision and gut to do something off the beaten path; something highly creative. I had convinced myself that Dominic needed me, only to discover later that it was I who needed him all along.

All I can say of the days I spent shooting with the Cumos is that the family is a reservoir of strength and adaptability. Never before have I been so in awe of our unending capacity to sacrifice and draw strength from one another through the caring process.

Every moment of every day (and night) is crafted around Dominic’s needs. Round the clock nurses help manage Dominic’s cares and the Cumo house is equipped with medical tools, machines, and extra supplies, top to bottom, in every room, shelf and closet.

All this for a young man who inspires every person he meets to never believe what someone tells us is not possible for us.

But Dominic needs our help.

Please share our wish for a reliable, medically-customized van for Dominic and donate to the campaign today at helpdominic.com.

As I left the Cumo household early in the morning, an unanticipated compliment from Dominic’s mom, Shawnee, hit me right in the solar plexus. She, still in her bathrobe, me emotionally and physically exhausted from the days of shooting multiple projects and dancing, walked to my rental car packed with my video gear  and Shawnee said: “I don’t think anyone could have done what you did. You were like a silent video ninja. Thank you.”

A long, warm embrace and we finally parted. As I drove away, though, I knew, I would never forget Dominic, the boy with ALS who smiles with each new turn of his medical journey; and a message to the world that, “No matter what. Two thumbs up.”

Photo Credit: Christine Beggs, Ripples Edge Media Photo Credit: Christine Beggs, Ripples Edge Media

Remember, the key to good causes is great entertainment.

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Let’s change the world – one ripple at a time!

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Produced & edited by: Christine Beggs, Ripples Edge Media (ripplesedgemedia.com)
Interview & Cumo footage: Christine Beggs, Ripples Edge Media
Dance videography: Carson Nicely of Nicely Made (nicelymademedia.com)
Production assistant: Miranda Parham
Stage lighting: Christine Beggs

Dancer: Christine Beggs
Voiceover & poem: Christine Beggs
Song: “Could There Be Any Sign of Peace in This Place?” by Chasing Dreams (needanamemusic.com)
Location: Atwater Village Theatre (atwatervillagetheatre.org)

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