Urijah Ermel was born with multiple rare diseases, and wasn’t expected to live past nine-years-old.
But despite the odds, he continues his fight at the age of 15.
Urijah has been diagnosed with Severe Common Variable Immunodeficiency, Ehler’s Danlos Syndrome, Mitochondrial Disease, Autonomic Dysfunction, Dysautonomia, chronic pain, and Juvenile Rheumatoid Arthritis.
He travels to and from the Stollery for treatment, and aspires to one day become an audio engineer.
“Urijah always thinks of others before him, especially in the medically complex world. He’s a young man who never asks for anything, and truly has great joy cheering others on. He has made it a mission to help all those who are coming up in the medical world after him to have an easier path than he has had,” described his mother Jennifer Ermel.
When Urijah was approached by the Make a Wish Foundation, he gave up the opportunity for another child.
With the help of the Road Hammers, Urijah’s dream of being behind the scenes and learning the ropes of audio engineering are coming to life on Nov. 2.
“It’s a great opportunity, and this allows me to be hands-on, and expand my horizons. Wanting to be an audio engineer and learning from some of the best is a dream come true,” Urijah expressed.
While fans are enjoying the Road Hammers from the stands during their benefit concert, Urijah will be back stage learning how it all comes together.
He said he’s most looking forward to learning something new.
“For Urijah to have this day, be seen as a 15-year-old with a dream and passion to be an audio engineer with the big goal to travel with artists and bands while pursuing what he loves, is beyond a dream come true. For one day he isn’t attached to his invisible illnesses, invisible disabilities, multiple diagnoses, and the preconceived notion and fear so many have. For the invisible medical world can be a cruel one as invisible to many, except those who are near and dear to him see the day-to-day struggles, isn’t a tangible thing,” Jennifer exclaimed. “For one day he can forget about all the treatments, hospital visits, tests, and have a sense of normality that so many take for granted.”
Clayton Bellamy, member of the Road Hammers and Bonnyville-native, said the band was proud to be able to be a part of making Urijah’s aspirations become a reality.
“It feels great to inspire people. I think we’re all put on this planet to do that, to share what we’ve learned and what we’ve been blessed with, with others. I’ve been extremely blessed to do what I love, and that’s largely due to the community I was raised in,” he noted.“I feel like the least I can do is share that and pass that on, and if in some small way we can do that by having him out to the show and take him behind the scenes to see what it’s like from set up to tear down, that’s great.”
For Bellamy, Urijah’s ability to “overcome the obstacles in his life” is what resonated with the singer/songwriter.
He added, Urijah’s passion is what the local fine arts society is all about.
“The things he wants to do, is what I think the fine arts society is trying to do,” Bellamy expressed. “We’re wanting to start a bursary for kids like him, to be able to go and pursue post-secondary education in the arts, whether that’s audio engineering, dance, music, or acting. We’re trying to inspire the kids in our community, to build them up, and lift them up, to show them that whatever it is they want to do, they can pursue it.”
The event on Nov. 2, is a benefit concert for the Bonnyville and District Fine Arts Society, which is one of the reasons why it ties in so well with Urijah’s dream of being a part of the show’s production team.
“This is truly humbling beyond words, and those that know me know that I’m usually not at a loss for words,” said Jennifer.
She added, if it weren’t for the community or the Road Hammers, this opportunity wouldn’t be possible.
“From the bottom of my heart, and my husband Rollie’s heart, we thank you. It isn’t easy for us to show this vulnerable side and let so many in. Perhaps because this is the only journey we know with our Urijah, we forget that this is not a normal journey to most. We’re truly blessed and grateful for the extending of a hand and showing that inclusion comes in all forms,” she described. “Your kindness and generosity will never be forgotten, and this may seem like a little gesture to you, but in our world, this really is a huge thing. In our family, we cherish each moment and thank you for allowing this one to be one we know Urijah, and ourselves, will never forget. Thank you just doesn’t seem like enough.”
Urijah agreed, “Thank you very much for this opportunity. It means more than you will ever know, and I’m very grateful.”
