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SMA Doesn’t Stop Ethan From Going to New York City

At just 17 years old, PHS patient Ethan has already performed at the Trump Towers in New York City – a bragging right that comes as part of the trip he took out east this spring with his high school band.

Ethan 4_compressOnce every four years, Ethan’s high school band travels to another part of the country – and for this particular trip, New York was the winning state after beating out Florida and Colorado. Ethan plays percussion in the school band thanks to an unconventional method that allows him to use a drum app on an iPad hooked up to an amplifier. This allows him to use his hands to pay instead of needing to hold drumsticks, which became harder as Spinal Muscular Atrophy affected his ability to hold a grip on the sticks and almost caused him to quit band.

Ethan 2_compress“So we raised funds and were out there for about three days, plus two days for travel. It was about 24 hours there and back driving on a bus,” said Ethan. “I had never done that before – it was pretty interesting, to say the least.”

To ensure Ethan stayed healthy and safe while travelling halfway across the country (as he receives 24 hour nursing at home), two nurses from his home care agency joined him for the trip after a donation page generated enough funds to pay the nurses’ way. His dad was also able to join in on the fun as a chaperone for the trip, and snapped some of the shots that they shared with us. PHS was able to ensure his equipment and supplies were prepared for the long trip.

Taking time for the sights

Although blizzard conditions caused one of their outdoor concerts to be cancelled, Ethan and his classmates were able to take some time to do sightseeing during their visit – and one stop that stood out to him was the 9/11 memorial museum.

Ethan 3_compress“I wasn’t really old enough to remember the actual event, but we’ve all seen videos of it or heard about it. So to actually be there and see it all was pretty incredible,” he mentioned.

Ethan also had an interesting experience on the subway system, discovering how fast paced and automated the whole process is.

“Getting on was a little difficult, but getting off I would kind of get stuck with my wheelchair a little bit. I got off which is good, because with its automation, I was concerned it would try to keep going – which wouldn’t have been good,” Ethan laughed.

We are so happy Ethan was able to travel to New York and see everything it had to offer – keep drumming!

Originally published: June 30, 2015

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