For Brayden's BenefitSep 01, 2020 11:54AM ● By Karey Solomon
When Brayden Blackwell was born in January 2011, he was three months early, weighed two pounds, five ounces, and wasn’t breathing. CPR ruptured his lungs. But a very long hospital stay, first at Arnot Ogden Hospital in Elmira, and then at Janet Weis Children’s Hospital at Geisinger Medical Center at Danville, saved his life.
In the first week, medical personnel closely observing the newborn thought they saw something different about his features and told his parents he might have Down Syndrome. But Brayden’s difficulties were rarer—a genetic analysis discovered his eighteenth chromosome was ring-shaped rather than straight. Parts were missing. Today, the nine-year-old is a beautiful little boy—not verbal, though he knows how to giggle. He has delays but he’s making progress, and he’s easily described as a very happy child. He sees thirteen different medical specialists. He needs daily nursing care because he’s still dependent on a feeding tube. “They said he would never walk but he’s running now,” his mother, Susan Blackwell, says, adding he’ll do better after he has heart surgery to address an inadequate pulmonary valve. She’s hoping this will happen soon—before flu season.
In America, eighteenth chromosome abnormalities were only differentiated from Down Syndrome in 1996—and, twenty-four years later, research is still in its infancy. To help raise awareness and money for the San Antonio-based Chromosome 18 Registry and Research Society, and because she loves running, Susan organized Brayden’s Trail of Strength, an annual August 10K hike/run through the Tioga State Forest. This year, despite a smaller-than-usual turnout, participants raised 800 dollars for research.
One of the winning runners, surgeon Michael Haraschak, is also a music lover. He approached Susan after the 2019 run and offered to help organize an even larger event, a something-for-everyone festival with live music, camping, a 5K run, and a fishing derby for children. Called Brayden’s Benefit, the inaugural event, the North of 80 Music Festival, will be held for a limited live audience from September 25 to 27, at Stony Fork Creek Campground outside of Wellsboro.
When they began planning at the beginning of 2020, it seemed all the needed elements were aligned for the perfect event. The campground is not only a beautiful natural setting for an outdoor music event, it’s also acoustically felicitous, as fans and musicians have noted during the annual Hickory Fest music festival that normally takes place in August (the 2020 festival was cancelled due to concerns about COVID-19). The campground wanted to have another music festival there. Michael, with friends involved in many notable area bands, knew the best people to approach about performing. Some bands even reached out to him to ask to be part of the event when they learned about it.
Near the campground are logging trails perfect for running. Michael’s wife, Tracy, and son, also a Michael, are both fishing enthusiasts (Tracy is currently training to become a deputy waterways conservation officer) and offered to work on a fall fishing derby for children, to be held Sunday morning.
“I want the festival to be about more than music, and I see it as a great opportunity to raise awareness about Brayden and Chromosome 18,” Michael says.
While many of the bands have had to readjust personnel due to the challenges of this year, they’ve been flexible and supportive of this event. “Everyone understands we don’t know what things are going to be really like,” Michael says. Organizers are prepared for contingencies, trying for a very limited, socially-distanced audience, and while they’re expecting to lose money on the event, they hope they’ll be able to build on this year’s festival when circumstances are better. Although they were originally hoping to pack the campground, Michael is complying with Pennsylvania’s mandates on gathering and, as of press time, is holding to the requirement of no more than 250 people—that includes bands, personnel, and audience. If these restrictions are lifted before the festival, as everyone hopes will happen, more people will be able to attend. The space is also large enough to allow for social distancing, so he’s confident it can happen safely. And, he adds, “One of the reasons I wanted to go forward is to get the word out—what we’ve worked for is to get people to know about it.”
One of the core musicians, Mike “MiZ” Mizwinski, says helping Brayden is a large reason for why he wanted to be there. “When I heard about what a rare condition it is, I knew it was a good thing to do. When an organizer of a music festival has an event for a good cause, I think it gives the event a higher meaning,” he says. “It makes us feel good about being there, and makes the people who are there feel good.”
MiZ, who has played on stages across the country, will be performing with a four-piece band. He describes his music as “a blend of rock and roll, Americana, blues, country, and folk.” He has a particular love for the music of Nobel Prize laureate Bob Dylan and is known for his renditions of Dylan’s music.
The musical lineup also includes Downstream, Nefarious Funk, Scott Turner, Dave Brown and the Dishonest Fiddlers, Dave Brown playing solo acoustic, Serene Green, Forc, Chapel Street Junction, Gabe Stillman, Van Wagner, Eaglemania, and Slightly Askew.
Attendees will also have a chance to learn more about Chromosome 18 anomalies. Susan has created displays presenting information, noting that “the research group encourages parents to help because they’re a small nonprofit.”
“I don’t know whether it will benefit Brayden now in his lifetime, but it will help others,” Susan says.
Find out more about the Chromosome 18 Registry and Research Society at chromosome18.org.
Visit braydensbenefit.com for the most current information on the event and to purchase tickets. Tickets will also be available at the gate. For camping information, contact Stony Fork Creek Campground at (570) 724-3096 or go to stonyforkcamp.com.