Adyn’s Dream, a non-profit organization to benefit spinal muscular atrophy, is hosting a show at Jackie O’s
The ALS Ice Bucket Challenge dared people of all ages to pour freezing water on their heads, mimicking the muscle atrophy effects of the neuromuscular disease, ALS.
On Aug. 23, 10-year-old Adyn Bucher participated in the Ice Bucket Challenge and posted it to Facebook. But unlike the posts many scroll through on their timelines, Bucher wasn’t mimicking these effects of muscle weakness — she lives with them every day.
Adyn, who lives with SMA, has an obsession with music and is tapping into that passion by hosting a benefit concert Saturday at 10 p.m. at Jackie O’s Pub & Brewery, 24 W. Union St.
When Bucher was first born in 2004, she was declared healthy. But after a year, when she wasn’t even crawling yet, her parents decided to have her blood work done at Nationwide Children’s Hospital in Columbus.
At 18 months old, she was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, an inherited disease that causes weakened limbs, muscles for swallowing, speech and breathing. Her parents were devastated to find out that most SMA Type 1 patients die by the age of 2.
At age 2, however, she was reevaluated and upgraded to SMA Type 2. Although Type 2 children are stronger, every little sneeze or headache had to be evaluated with caution, and she was still unable to walk or crawl. Unlike most 2-year-olds who learned to cruise and toddle, Adyn needed to be carried everywhere.
Besides her interests in dolls and playing outside, Adyn also began to develop her love for music at age two. She could belt out every word to the White Album by The Beatles and was an avid lover of The Wiggles.
It wasn’t all smooth sailing to the smiley, indie-music-loving girl Adyn is today — in June of 2010, Adyn was rushed to the Nationwide Children’s Hospital Intensive Care Unit because of dangerously low oxygen saturation levels. After close monitoring for three days, Adyn was lucky to leave the hospital with her life.
The scare, however, was enough to spearhead the founding of the non-profit Adyn’s Dream last June by her father, Brian. The organization was created to provide assistance to families of children with SMA through the organization CureSMA. Because only one in 10,000 babies are born with SMA and the disease is the leading genetic cause of death of for infants according to CureSMA.org, it isn’t typical to see many “older” kids like Adyn with the disease.
Unusual for other 10-year-olds, too, is the amount of live music that Adyn has had the opportunity to see. Since birth, Adyn has been to almost 30 concerts and 10-15 music festivals, and has met many artists including Colbie Caillat and one of her favorite bands, The Steel Wheels. Still “pretty high” on her to-meet list is Taylor Swift.
“Adyn made each member of Steel Wheels roses out of duct tape and carried them around the festival until she saw them and personally handed over their rose to them,” Brian said. “That was one way that she could give something back to them. I’m sure she’s given more back to them than she realizes.”
Saturday’s event will open with a performance by Old Boy, a folk-rock band making a special trip for Adyn to Athens from Cleveland. Although Adyn hasn’t seen Old Boy live, she and her dad have listened to their album countless times.
Taking the stage at 12 will be the D-Rays, a band Adyn made a special trip to see at the Nelsonville Music Festival last May.
There will be a raffle for tickets to the Ohio State/Michigan football game in Columbus scheduled for Nov. 29. Additionally, other Athens local shops donated items for raffle, including Import House.
“Adyn is such a cute girl and really fun to be around,” said Karen McGuire, manager of Import House. “She always has a good time when she comes in the store. (Adyn’s Dream) is a good cause and honestly that family is great.”
You can donate to Adyn’s Dream or purchase Ohio State/Michigan game raffle tickets to benefit those with Spinal Muscular Atrophy at www.adynsdream.org.