Dominic CUMO is the ALS Guardian Angels (ALSGA) "Racing For A Cure" Car Show Ambassador. Here, in his own words, is Dominic's story:
I was born 100 years after Lou Gehrig and would soon learn of the disease named after him. I started having tremors and twitches at 5 months old. Mom thought they were seizures and we kept getting EEG's and sleep studies. I kept getting weaker in my legs...and stronger at the same time because I was growing. At age 2 ½ years, the neurologists at Loma Linda Muscular Dystrophy Association (MDA) clinic gave us a possible diagnosis of Spinal Muscular Atrophy (SMA) or congenital Amyotrophic Lateral Sclerosis (ALS) (Lou Gehrig’s disease). My EMG and nerve conduction study was severely abnormal and showed evidence of some form of progressive anterior horn cell disease. They did not believe it could be ALS because it would have been extremely rare. I tested negative for SMA but so do 5% of patients. So they gave me a diagnosis of SMA. I was only 15 pounds at that time and failing to thrive, so I got my feeding tube (G-tube). I was diagnosed with spastic quadriplegic cerebral palsy at birth as well. But as my muscles weakened, the clenching of my fists and curling of my toes was not noticeable. My brain is completely sharp...always has been.
By age 3, I could not stand up by myself from the floor. By age 4, I lost the ability to write with pencils/markers. The MDA clinic said I didn't look like other SMA children they had ever seen in the past 30 years. We went to the Stanford SMA clinic and they agreed. By age 5, I could no longer walk, but could stand leaning against the couch but I could still use my arms. By age 6, I could only stand in my stander and needed a BiPap for apnea and I started getting tremors in my arms. By age 7, the stander hurt too much, couldn’t use my arms, but could still play video games. At age 7 ½, I got my Trach and ventilator because my diaphragm did not work well enough. At age 8 ½ on June 19th, 2012, the MDA clinic gave me a diagnosis of congenital ALS, Lou Gehrig’s 109th birthday. I smile because I have a positive outlook and believe I will walk again, get married and have an abundant life. For as long
as I can remember, I have always wanted to be a firefighter. On November 20th, 2012, Mr. Sid Hultquist, Fire Chief of the Apple Valley Fire Department made me an Honorary Firefighter. My badge goes everywhere I do. I
love cruising the seas...and have always loved the water, swimming and snorkeling. On our most recent Princess cruise, Captain Marco Fortezze made me an Honorary Sapphire Princess Captain.
Princess also changed my life, by posting a story about me here on FB, I was able to connect with many ALS pALS and ALS Guardian Angels. ALSGA and Mary Betti donated a wheelchair van to me which has also changed my everyday life.
I get my passion for martial arts from my grandfather who was a Golden Glove boxer. My Uncle John gave me an extensive collection of martial arts movies and I watch them often hoping someday to become a blackbelt. January 2013, I started ATA Tae Kwon Do with Mr. Alan Moser. I enjoy watching and going to boxing and MMA events. My favorite MMA fighter is Urijah Faber! My favorite boxer is Kay Wild Wild West!
Star Wars has been a huge favorite in my life with many friends enjoying the same and going to ComiCon and getting to meet George Lucas at the Premiere of The Clone Wars in 2008. He invited me to a private tour of LucasFilm studios in 2011. This is where he gave me my Yoda that sits atop my wheelchair and goes everywhere with us.
I am fortunate to have the best friend in the world, my service dog, Kipper. He has saved my life 3 times and was awarded Pet Hero of the Year by the San Bernardino Humane Society in 2012. I also have a pet gopher snake named Samantha.I have a wonderful teacher Ms. Heather who comes to my house everyday to teach me, even in the summer on her own time.
My other career, in addition to firefighting, is being a Paleontologist. I love fossils and dinosaurs. My mentor is Mr. Eric Scott who has taught me and shown me many facts about the dinosaurs in our own backyard.
I have told my mom repeatedly that I was born with oven mitts on. I absolutely love to bake cakes and cupcakes. I used to crack the eggs and measure all the ingredients, now I have assistants who do all that for me.
I love to sing and know quite a few songs....in the hundreds. My favorites are Toby Kieth, ABBA, Justin Bieber, Garth Brooks, Johnny Cash, Frank Sinatra, Aretha Franklin, and quite a few more.
And last, but not least....I LOVE Frogs!