Culture
Adyn’s Dream Fundraiser Brings Big Bluegrass Names to Athens
By: Emily Votaw
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Adyn Bucher is a young girl with an infectious grin, a love of vibrant hair colors and a real passion for music. She is also one of thousands of people in the country fighting a lifelong battle with spinal muscular atrophy, a genetic disease that weakens the motor nerve cells in the spinal cord, which leads to devastating full body weakness, effectively making even the simplest tasks, like walking across a room or even coughing, impossible.
A little under two years ago Adyn decided that she wanted to combine her passion for helping others with her love of music.
“Adyn has been going to music events her entire life, I think her first festival she went to, she was five months old,” said Brian Bucher, Adyn’s father. “A couple of years ago we met Old Crow Medicine Show, one of Adyn’s favorite bands, and they were really great people and we hung out with them backstage for probably about 45 minutes. We decided that I would also take Adyn down to Nashville for their show, and that’s a bit of a drive and we started talking on the way. She’s always wanted to try and help other families dealing with SMA, and we started to talk about how we could combine her passion for helping others with her passion for live music.”
Following those conversations, Adyn and her family founded Adyn’s Dream, a SMA fundraising organization that utilizes live music to collect funds to benefit families effected by SMA. This Sunday marks a particularly exciting bluegrass event at the Little Fish Brewing Company, starring the likes of Billy Strings, the Hocking River String Band and CAAMP.
“We wanted to do something to help SMA families in significant ways, and being a SMA family, we know firsthand how difficult this illness can be,” said Bucher. “We know a lot of families in the SMA community who struggle financially to pay for things that they absolutely need and a lot of them just don’t have that money sitting around, which causes a great deal of stress for a family who is already dealing with some pretty significant trials.”
Bucher said that the money raised by Adyn’s Dream goes a variety of places, but that recently it has been used to allow families affected by SMA to attend the annual Cure SMA Conference.
“This conference is unlike any other experience, especially for families dealing with SMA,” said Bucher. “When you have a child with SMA, it can really make the entire family feel isolated even if they are surrounded by supportive family and friends. Meeting other families who also deal with SMA is a huge deal for these families.”
Bucher still remembers the unifying, comforting nature of attending a Cure SMA Conference several years ago.
“I vividly remember hanging out with a few other parents and watching all these kids in wheelchairs play freeze tag with each other,” said Bucher, who said that before the conference, Adyn had never really seen another child in a wheelchair. “Those kids were having the time of their lives, and that’s a part of what we want to provide to families living with SMA.”
Bucher said that transportation and lodging for the conference can be incredibly expensive and that Adyn’s Dream has already funded trips to several conferences for a number of families who wouldn’t have been able to attend otherwise. The organization has also donated medical equipment and general funds to SMA families in need.
“We’ve provided transportation and lodging for other SMA parents in long term stay scenarios at hospitals; a lot of people don’t realize that if you have a child who can’t leave the hospital, you still have to work as a parent, you still need to pay your bills, so you have to keep traveling to work even though your child is in the hospital, which can be very expensive,” said Bucher. “If your child is having a spinal fusion surgery, you’re going to be staying at a hospital for a long time.”
Although raising funds is important, Bucher emphasized that awareness about the disease is key.
“SMA is actually more common than a lot of people realize,” said Bucher. “About one in 10,000 children are born with SMA, and it has been the leading genetic cause of death in children under the age of two.”
Bucher encourages the general Athens public to head out to the Little Fish Brewing Company this Sunday for some delicious brews, chow and, most importantly, great music.
“We’re pretty excited about this particular fundraiser, bluegrass is one of our family’s favorite genres of music, and we love that we can bring Billy Strings into the area, he’s one of the top guitarists in the country, and we’re really fortunate and very thankful to have him be a part of this event,” he said. “One of the things that I hope starts to happen is that people equate really good music with our fundraisers.”
Sunday’s event will take place from 3 p.m. to 7 p.m. and feature a variety of family friendly activities, including balloon art from Balloosions, henna tattoos from the Henna Faerie, face painting and a variety of special raffle items. All meals will be provided by the Cajun Clucker. For more information on the event and upcoming Adyn’s Dream fundraisers, visit adynsdream.org.
