Trevor, an 18-year-old with Down Syndrome, lives a full life.
He’s a member of his school’s choir and loves to sing and listen to people singing. He’s been the hydration technician for his high school football team for the past three years and has many great friends on the team. They come over regularly for s’mores nights, and he calls them often to sing songs over the phone.
“He always is super helpful and kind to everybody,” says Trevor’s mom, Stacey. “He teaches us all to live from our heart.”
Stacey refers to her son as a “big ball of life.” So it came as quite a shock when Trevor began to experience seizure-like episodes in his early teens. For two long years, Trevor’s specialists were unable to identify the problem. Doctors were able to rule out epilepsy and heart disorder, but were no closer to finding an answer.
“I just kept pushing,” says Stacey, “I said, ‘something is wrong.’”
Just before his 17th birthday, Trevor’s neurologist was finally able to confirm a diagnosis with an MRI. Trevor was diagnosed with Moyamoya Disease, a rare progressive degenerative disease in which the carotid arteries supplying the brain with blood start to overgrow and close off.
“On the one hand, we were relieved because we finally had an answer,” explains Stacey, but soon they learned that as a result of his condition, Trevor would require artery bypass surgery to prevent him from having a catastrophic stroke. “That was when it kind of hit all of us,” she says, “that it was way more serious than what we had ever anticipated.”
Trevor’s surgery was successful, but his recovery was incredibly hard. He experienced complications with his incisions for almost a full year after the surgery, and required a second surgery to help him heal properly. He has also continued to have small episodes, something that he will be susceptible to for his entire life.
Trevor’s passion for music helped him immensely during these hard times. “Music is pretty much his whole life,” says Stacey. In fact, Trevor dreams of one day moving to Nashville and recording his own record.
One group in particular, Cimorelli, has been a lifeline for Trevor. Cimorelli is a singing group made up of six sisters from El Dorado Hills, California. They’re known for singing covers as well as original songs, harmonizing together, and for their uplifting positivity.
“They want people to be happy with themselves,” says Stacey, explaining what she thinks draws Trevor to the group. “He feels a connection to them because they are kind of the way that he is, where everything is coming from the heart.”
Trevor would listen to Cimorelli in the operating room until he was asleep. After surgery, there was one Cimorelli song that Trevor would play every time he took a nap, on repeat, for hours on end. “It helped him relax and be able to rest,” says Stacey.
When Trevor found out that he would be receiving a wish, “he didn’t even think twice,” says Stacey. He immediately said, “I want to meet Cimorelli in Nashville.”
On the day of his wish reveal, Trevor “lit up like a firecracker,” says Stacey. In just four days, the family would be off to Nashville for the trip of a lifetime. “You could not contain him very well for the next few days, but it was all good excitement.”
In Nashville, the family joined Cimorelli for soundcheck, where Trevor had the chance to meet the sisters and watch on as they prepared for the show. “They all went over and hugged him and told him how happy they were that they finally got to meet him,” says Stacey.
During the concert, Trevor received lots of special shout outs from the group, including having his favorite song dedicated to him. “The concert was great, they really pushed the positive energy,” says Stacey. “That was just an amazing night.”
After the show, Trevor was gifted as much Cimorelli merchandise as he wanted, both from the group and the family’s Airbnb host, who generously offered some additional gifts from the merch booth.
For the remainder of their trip, the family saw the sights in Nashville, took in many more musical acts, and ate lots of amazing barbeque.
“From the bottom of my heart, the trip was truly magical from start to finish,” says Stacey. “As a family, it was a chance for us to enjoy something without worrying. It was a reprieve from all of the stuff that had been going on for the last year.”
Today, Trevor is back at high school, where he’s set to graduate next year. “Trevor has been a lot more chipper and happier since we got home,” says Stacey.
The family is ready for life to finally get back to normal. “We are looking forward to Trevor hopefully continuing to get better and stronger,” says Stacey. And he’s already been asking to go back to Nashville, so another trip may soon be on the horizon.
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